Tuesday, 26 February 2019

Accepting health dips and declines as they come.

Greetings everyone! I hope you are all as well as you can be. I am sorry I haven't written my blog for so long. I do miss it terribly but will explain as I go along so please do bare with me! Buckle up! It is going to be a bumpy ride! 

As many of you will know Tony was diagnosed with bladder in cancer back in June 4 days after we renewed our wedding vows (which was one of the happiest days of my entire adult life! I think I also speak for Tony and Amelia-Rose saying that!) We celebrated 10 years of a remarkably happy marriage with all our friends and family and had a really wonderful day! 

Tony was even able to support me to STAND (albeit only for a few minutes) so were blessed to have a 'first dance'. One day as we were driving along in the car Ed Sheehan's 'Thinking out loud' came on the CD and Tony turned to me with tears in his eyes and said "This is my song for you you know?" The very first line is "When your legs don't work like they use to before and I can't sweep you off of your feet" Being able to lean on him and be held in his arms as we swayed back and forth was absolutely wonderful and something I will remember for the rest of my life. 

When Tony was first diagnosed we were told that he would need to have surgery in our local hospital 25 minutes away and we were under the impression that he would be in overnight and they would remove as much as they could. Unfortunately we didn't find out for several weeks afterwards that they had actually only removed part of one tumour to biopsy it and more had grown in the mean time! 

After several MRI scans, CT scans and blood tests we were told that he would have to go to a hospital an hour and a half away for further surgery and the new consultant has been an absolute God send! We are so blessed that he took over Tony's care! 

We were told by our local hospital that he would need to have his entire bladder removed as he had 8 large tumours and they would have to remove part of his intestines to build him a new bladder which he would then have to drain using catheters as he wouldn't get the sensation to go to the toilet anymore. 

Unfortunately the hospital hadn't sent over any of Tony's test results and the consultant felt that because he is a lot younger then the average age of most of his patients removing the bladder (which would also mean he had to be in hospital for at least 2 weeks, obviously we would do whatever it took to make him well again but it was a very daunting idea.) He booked the surgery for 2 weeks time after his initial consultation which was the earliest free slot he had and went ahead and did the surgery. Strangely we were told that he would actually need a deeper general anaesthetic so they would have to do whatever they could in an hour. When they went into the bladder they removed the tumours and because Tony was doing well on the table and everyone was happy they continued with the surgery for an extra half an hour and were able to remove all the tumours! It was the very best possible outcome and we were thrilled! 

They were due to another surgery on the 17th January (it would have been earlier but the surgeon had a 2 week holiday so it was a little later, if anyone deserved a holiday in my eyes though it was him!) where unfortunately they did find some new tumours. We had to wait for the biopsy results but were thrilled to find out that the tumours they were 'residual tumours' and were just too small for them to see the first time. This was once again the best possible outcome. 

A few weeks after the 3rd surgery Tony got a phone call from the larger hospital and the consultant had decided for Tony to have the best chance to go into remission and and make a full recovery was to have a course of chemotherapy for 6 weeks. 

The chemo is unlike conventional chemo in that they do it directly into the bladder using a catheter so he won't get sick, it won't attack his immune system and he won't lose his hair.  

Amelia-Rose was most thrilled about his hair as when we told her Tony had cancer bless her heart her biggest concern was that Tony was going to lose his hair and his beard!

 He has had several unpleasant infections but with various combinations of antibiotics they have cleared up and lasted no longer then 2 weeks. He has been getting these infections throughout the entire experience and whilst he has had some since starting the chemotherapy they were not new to the situation and as I say he has been getting them throughout the entire journey. 

Unfortunately in amongst all of this I have been going through the very worst gastro flare up in the past year, I have been horrendously sick and wretching and unable to feed I have lost in just a matter of 4 weeks just under 2 stone in weight and am now my lowest out of hospital weight I have ever been. 

My carer's have been incredible supportive physically and emotionally and been very understanding. Their kindness and understanding have been incredible and supported me through a very difficult time. Having the carer's come into our lives has been has been a brilliant spark of light and hearing about their lives often makes me laugh and is a joy, especially when I feel so unwell! They are also very respectful of the fact that I am a young woman and treat me with the highest level of dignity. 

Being so sick has been incredibly emotionally taxing and has been difficult to accept, sometimes when you go through a decline whether it is pain or fatigue it is difficult to process and after a while you cannot help but wonder if this will be the new normal. Then you have to process that if this is the new normal where does that leave you. 

I find this is the time I write the most poetry, I will wake up in the night with words flowing and am able to be honest with myself and those around me with words gifted from my creative soul. For some people it is painting, using their hands to make craft, I enjoy making collages. Using words taken from magazines and pictures and all put together to create something new. We are fortunate enough to have a wonderful kingsize bed which is actually two separate mattresses and I am able to raise the legs up and raise the head of the bed to sit up I also have a wonderful wooden tray that has legs to hold it up off my lap that I can lean on.

Just before Christmas I composed and finished my first poetry book which I am so proud of. We are now selling copies for 10 pounds (sorry I do no have a pound sign on my laptop frustratingly!) plus postage which helps cover the cost of printer ink, getting them bound at a local business, we donate 1 pound from every sale the the EDS society and the hours and hours of editing, writing and creating the poems. \

The book is called "Dazzle" because a herd a zebras is called a dazzle and the love and support we provide one another in the community is amazing. I always like to say that us zebras are the light that shine through the dark stripes. People who live with EDS are called zebras because early in medical school doctors are taught  "If you hear hoofbeats behind you think horses not zebras" and we are indeed the zebras! It is one of the reasons that diagnosis takes such a long time. On average 10 to 20 years.

Dealing with a decline in health is another hidden aspect of living with a disabling chronic disease. With EDS you look well which can be very frustrating. Even though it is said with love for many people that live with EDS when they are told that they look well what they hear are years and years of doctors telling them that there is nothing wrong with them and that it is all in their mind. 

When you are going through a decline you think about all the areas of your life and how it could affect the things you love the most. The uncertainty of a decline often increases people anxiety and often for me this is a time that I find deep meditation and prayer extremely helpful. 

It is difficult to explain to people that don't have any uncertainty about their health and don't have to face not knowing from one day to the next how their health will be in the morning when they wake up (IF they have been able to sleep. Extreme insomnia often comes hand in hand with chronic pain sufferers) but being able to talk to someone honestly about your concerns can really help you acknowledge your thoughts and release them to wherever thoughts go! 

If you are unable to get out of bed bringing some of the outside world in can be extremely pleasing. I use to very much enjoy gardening and growing our own vegetables so having flowers brought in is wonderful. Last week my Mum picked me a beautiful bunch of daffodils from the garden that we planted together years ago. 

I also turn to what I call my 'happy films', I confess, I confess I am a huge Star Trek fan and watching Star Trek The Next Generation and Star Trek voyager lift my spirits and helps pass very long days. There are other films with strong female storylines that inspire me to keep going and try to be the best version of myself that I can be. 

I of course didn't know that I had EDS as a child but I have all my life said the same prayer "Lord let me be a lighthouse for those around me to shine your love brightly and protect them from the storm" This prayer I turn to daily when I am experiencing a decline. 

I use to babysit for a wonderful American family when I was a teenager and once when I was going through a difficult time the mother in the family said to me "There is an old saying you must always remember that 'This too shall pass'" and it is a saying I meditate on and repeat when things, especially pain are overwhelming me. I have it on a small badge which I wear when things are tough, I rub it in a slow circle and say out loud "This too shall pass". 

When you are going through a health decline you must acknowledge that looking after yourself is not selfish, it is giving. You are trying to bring yourself back to a place where you can be the best version of yourself within the limits of your health. Family is a wonderful resource to keep you going and even if you have just one or two friends don't be afraid to lean on them, they will know that when you can and they need you you will be able to be there for them because you have looked after yourself and gotten to a stage where emotional even if not physically you have been able to get yourself emotionally well enough to give. 

I have a small circle of close friends who all at one time or another have said to me that they don't feel like they can complain or confide in me if they have a difficult experience to work through. My answer to them is that EDS has taken so many things from my life but please do not take away my ability to be your friend. Hardships and suffering are a part of all of our lives and you cannot compare them (I say that with much love) your suffering is just as real as mine and I want to be your friend and be there for you. Please do not let my EDS take that away from me. When I have explained it like that they have been completely excepting and I am pleased to say that all of our relationships have balanced out from there and we have moved forward in our friendships. Being honest can often be frightening but it opens so many doors and I would implore you to find that courage within and speak your truth to those you love and to those who love you. 

In 2019 I am going to try and write my blog more and continue with my youtube channel. I cannot tell you how much each and every message I receive from another zebra touches my heart and encourages me to speak my truth. 


Love and blessings to you all, the zebras, the carers and the people who wish to learn more about this invisible disease. I appreciate each and every one of you and thank you from the bottom of my heart. Together we will dazzle! 


Thursday, 13 December 2018

Why I don't like Theresa May

I must first say sorry because I haven't written for so very long. This has been an incredibly hard year for our family and I have drawn all of my courage and strength inwards to keep us all going as we have supported one another through the year.

At the beginning of the year I was 3 days shy of 7 weeks in hospital, I went in because I was starving, It had been over 6 weeks since I was able to hold anything down and in the last few weeks before admission even water wasn't staying down. Whilst I was in hospital I had double pneumonia twice and very nearly didn't pull through. Whilst I was in hospital my beloved Grandmother passed away, whilst I was my most unwell with the pneumonia under the care of a nurse from ICU and I wasn't able to go to her funeral. Now I know it is nothing in comparison (it really isn't) but 2 weeks later my lovely 3 legged bunny Zapper died and another 2 weeks later my wonderful cat Toby, whom I considered my guardian angel and one of my soulmates in life as he also lived with a chronic disease (FIV) and came into our lives (after a life on the streets) the very week I first became disabled passed away. My heart broke when my Grandmother passed and just kept breaking.

All of that in itself would have been traumatic enough but in January my husband started to notice he was having to go to the toilet all the time. Off he went to the GP who told him he had an enlarged prostate and put him on some medication that you had a to take for a month before introducing another medication which you had to take as a combination for a month and then be on for an additional month before you can state that your symptoms hadn't improved or are worsening (he got worse continuously) In June he was diagnosed with bladder cancer and we learned he had 6 large tumours in his bladder, he was booked in for surgery but they couldn't do it until August. We were told that they would remove what they could but may need to take the bladder which he would have to travel to a different hospital for. All this time we didn't know if the cancer had spread or how aggressive it was. When the surgery came round in August he had 8 large tumours and we were under the impression that they had taken what they could. A month later in September we sat in the consultant's room only to be told that actually they had only removed half of one tumour because there were so many they were just going to refer him to the hospital just over an hour away to have his bladder removed. I cannot put into words the stress, fear, torture and devastation all the 'not knowing' does to you, as with any health crisis this has brought our family closer together but it has been horrendous. Just horrendous.

When we went to meet the new consultant the old hospital had sent over no notes on my husband and whilst at the time this was really frustrating it turned out to be a blessing in disguise. Up until the day of his surgery we didn't know if he would be removing tumours or need to go on to take the entire bladder but he vowed because of my husband's age he would do all he could to save his bladder. In an hour and a half he removed all 8 tumours and although we won't know until January if there is any regrowth his prognosis at this point is really good!

I just wanted to explain that before I continue because I'm sure it will help you understand the impact of my words.

I don't like Theresa May and I despise the Tory government. Look, I grew up in a Labor household the granddaughter of a welsh miner and the daughter of teachers (who lived and worked through the 80's and Maggie's rein but this distaste (although the word is hardly strong enough) for our current government has nothing to do with my upbringing. This is personal.

As you know if you read this blog I live with a debilitating chronic disease, chronic pain and my husband is my full-time carer. I know we are incredibly blessed to live in a country that has a benefits systems otherwise we would be out on the street but the level of corruption in our government is disgusting, for instance Boris Johnson ''forgetting'' to declare $52,000 worth of income, that is what I call corruption. (Please excuse the dollar sign this laptop doesn't have a pound sign! We brought it a few years ago and it was refurbished, I can't say I thought to ask to look if there was a pound sign!)

There are more people using food banks then ever before and yet the Tory party can only talk of the positive handle they have on issues of poverty and homelessness. If they talk about it at all.

They make the rules up as they go along and can cancel their vote and yet deny ours. Brexit has thrown this country into turmoil and sadly it is our children and grandchildren who will forever live with the fall out.

Theresa May has been caught in almost as many lies as Donald Trump and yet her precious party won't put through a vote of no confidence.

This though, this is personal. In the last 3 years despite being granted PIP for 3 years I have been assessed and reassessed 3 times, the first time there was no disabled access into the building but we were told if we didn't attend the appointment our benefits would be stopped so my husband had to carry me into the room. Apparently disappointed that they were unable to reduce my points the last time they insisted on sending a nurse out to my home. The invasion of privacy is mind-blowing and I can honestly say, as for anyone living with chronic disease this constant speculation about your illness does nothing but compound the feeling that you aren't good enough and should be able to work through the agony, illness and dislocations.

I am meant to be under the care of 2 consultants in London and travel between 2 and 4 times a year however we cannot afford to pay for the hotel or train fair and whilst we can get the train fair back you have to pay for it upfront and we simply do not have the money.

We have to use a food bank and countless times this year have quite literally had not a penny in the bank. This is the reality for so many disabled and chronically ill people. My husband and I do not buy new clothes so that we can keep our daughter in new clothes as she grows. My husband and I do not spend any money on hobbies and alternative therapies for me so that our daughter can have piano lessons and as a treat we can take her to the cinema or swimming when we can. I do not know what it is like anymore to not worry about money. I do not know what it is like to not be afraid that we can't afford this that or the other and Lord protect us the day our car finally gives up because we won't be buying a new one that is for sure!

Our weekly family treat? We meet with our wonderful friends in Morrisons cafe on a Friday night for dinner because the children eat for free and as I can't eat (I am tube fed into my stomach) we only have to pay for my husband's dinner which costs less then a fiver.


This is hidden poverty, it is being able to pay your bills (although we have to use all my PIP which is meant to help to pay for me to manage my condition) but have absolutely nothing left over.

With Christmas fast approaching this year we have had to do the ABSOLUTE bare minimum, my husband and I aren't exchanging presents and we are receiving a Christmas food hamper from our local church (I was actually part of the original team that set the bank up never thinking I would become so reliant on it myself.) We had to borrow money from family to buy our daughter presents. I have to choose between food for my daughter or presents for my friends. I think you can guess what has won.

I have honestly put off writing this for so long because here's the thing that the Tory government have done under Mrs May charge. They have compounded the shame that comes with poverty, they berate, they target and victimise those living in poverty and it is for all of those reasons that I haven't shared my story any sooner but my God something has to be done and whilst I am sure this isn't going to change the world if someone who politically sits on the fence or doesn't choose to vote reads it and changes there mind then I have to write it.

Already I am looking forward to January as my daughter will be turning 10 but December's PIP, which covers the bills must pay for that Birthday.

It is so easy for people to fall into the trap of complaining about Christmas shopping but I implore please don't. Everything screams at you at Christmas "buy this!" but for the people who can't it is heartbreaking. I must admit I like to make donations to charity's in people's name rather then buy physical presents (haven't we all got enough stuff?) but that is my Christmas shopping, that lovely warm feeling you get when you know you're all done. For someone who is living on PIP or a single parent on universal credit this is a really really hard time of year.

That is why I don't like Teresa May, not because I am greedy and want loads of money but because she is robbing people of life experiences, she is robbing people of security, she is robbing people of happiness, she is robbing people of their mental health, she is robbing people of laughter, she is robbing people of adequate food in the house all whilst walking around in shoes and an outfit that cost hundreds of pounds!

Poverty in the UK doesn't look like it does around the world and for that we are blessed but that doesn't mean that it is any less real or that people don't feel it's effects. It doesn't mean mother's don't weep because they can't afford to feed all their children and pay all their bills, it doesn't mean that men and women aren't sleeping rough on our streets. We live in a Western society with western poverty and that isn't being acknowledged at all by our government.

Theresa May has never experienced poverty nor does she take the time to try to understand it, to visit it, to try to make positive changes to prevent it. She is soul destroying and I for one think she should be utterly utterly ashamed of herself.

Saturday, 5 May 2018

Elhers Danlos Syndrome, suffering, my faith and me!

I recently posted a video on my Youtube channel UnexpectedSongbird about my faith, my disease and the relationship between the two and I was surprised by the response. I don't know why but I guess I thought it would be a video that not many people commented on but I was taken aback about how many people wrote about their own faith and their diseases or their lives because let's face it, we all face our own trials whether that's pain, disability, divorce, mental health, being gay, or whatever it is.

I have been a Christian my whole life. Growing up my Dad was actually a vicar so I was just always around people of faith. Like I say I have been a Christian my whole life however I have not acted like a Christian my whole life! They are 2 very different things and I must admit even now it's not always easy acting like a Christian when you're in so much pain you feel like you would do almost anything to make it stop! I am constantly learning though and one of the things I am really praying for at the moment is learning to be grateful because it is in my suffering that I need God most. It is on those days I pray more, I listen to sermon's more and I listen to worship music more. Everyday I wake up and I am in pain, most days these days extreme pain but boy do I need Jesus and my pain reminds me of that!

There is a song I adore by Erica Campbell called "Little more Jesus" and one of the versus' goes like this "I got too mad and I said too much, Went too far and I almost cussed, No my Mama didn't raise me that way, Lord I need a little help today, I went too sad and I'm crying too long, I can't keep sin everything is wrong, Yes my life seems way too hard but ain't nothing too hard for God" and then goes into the chorus which is "I need a little more Jesus" repeated... I LOVE IT! Oh if that doesn't sum up my relationship with this disease and my relationship with my God and Jesus then I don't know what does! I do need a little more Jesus, quite frankly I can't get enough! It's when I pause and reflect that I am able to put a smile on my face and think "Wow, that really is a blessing because I don't just need God in my life I NEED God in my life!"


I can turn to God in the morning or at night, any time actually and pray "Oh Lord you know what, I just can't do Elhers Danlos Syndrome right now, I can't, I am done but Lord, YOU can do EDS for me so here you go I am handing this over to you because I can't carry this burden right now"

Does it instantly take away my pain and make me feel well no but it takes away the BURDEN, it takes away the 'what ifs' of tomorrow, it takes away the 'this was not part of my life plan' feelings, it takes away the heaviness in my heart about all the guilt of the things I can't do with my daughter and the fact that we couldn't provide her with a sibling. Like I say it takes away the burden.

My Bible to me is the rod holding me up that I can lean on when things feel at their heaviest and no matter how heavy it never bends.

It's like being spoon fed little mouthfuls of emotional healing, that healing that is so much deeper then a physical healing. I know this body will not follow me into eternity, this body is temporary, this body is only for a little while and why do I know that? It tells me so in the Bible! 2 Corinthians Chapter 5 verse 1 "We know that our body-the tent we live in here on earth- will be destroyed. But when that happens God will have a house for us" further in the text verse 4 "While we live in this body, we have burdens and we groan. We do not want to be naked, but we want to be clothed with our heavenly home. Then this body that dies will be fully covered with life. This is what God made for us, and he has given us the Spirit to be a guarantee for new life. So we will have courage" Oh yes Lord I will have courage! I will have courage because this is not for eternity. Another great quote, one of my favourite, a promise "I will bring back your health and heal your injuries says the Lord" Jeremiah 30 V 17

Now when I first read that I took it to my heart and thought it meant I was going to receive full physical healing and now, with what I say next do not get it twisted I do believe God heals physically however in my own journey it has been about a deeper healing, God healing my spirit in living with this disease and I realised that maybe that is my promise for when I reach heaven when I reach my eternal 'body', he will heal my health and my injuries.

I have received some physical healing but not perhaps in the most obvious ways! I live with a ileostomy stoma bag and I am peg fed which means I am fed a fluid food over 10hours (any more then 50mls an hour and I am sick) directly into my stomach and to me those have healed me of the most horrendous symptoms I was living with before. Sometimes healing comes in the form of knowledge given to doctors so they can preform these incredible operations that give us an alternative way to live.

There are days when the suffering is so extreme I have to face each minute at a time, even an hour feels too much but again I find so much strength in my Bible and I want to share a few more Bible quotes with you in the hope that someone will relate to them and find some strength in them.

When I am living those minute to minute days this is what I repeat in my head (in fact I have it on a necklace that I wear everyday) "I can do all things through Christ who strengthens me" over and over I will declare this because I know what the devil wants me to believe and I must admit it would be much easier to say! "I can't do this" because as soon as that that thought comes in it is swiftly followed by a pang of anxiety which snowballs into panic. Here's the thing "I can't do this" is not a truth "I can do all things through Christ who strengthens me" is a truth and even though you may not believe it at the time you keep declaring that truth and I guarantee you it will reduce your heart rate, reduce your stress and reduce your anxiety which will reduce your pain because trust me the very worse thing for pain I have learned is to tense up!

Perhaps the biggest lesson I have learned along the road living with chronic illness, disability and pain is that what I need in my life is truth! 3 John verse 4 written from an Elder to Gaius says "Nothing gives me greater joy than to hear that my children are following the way of truth" and we need to imagine God is writing that to us. Are we going to embed ourselves in the truth or listen to the devil and what he tells us?

I think one of the most beautiful passages in the Bible that tells me that God doesn't love me despite my EDS he loves me because of my EDS is a passage that can be found in Matthew 11 verse 28-end when Jesus addressed people and said "Come to me, all of you who are tired and have heavy loads, and I will give you rest. Accept my teachings and learn from me, because I am gentle in spirit and you will find rest for your lives. The teaching I ask you to accept is easy; the load I give you to carry is light". That's it quite literally in black and white, having faith isn't hard, believing in God isn't hard. We make it hard when we want to over think it and pick it apart but if we accept and believe in our hearts what it says in the Bible then it really isn't hard. When you're suffering everyday totally understandably you tend to go down the "Why is God doing this to me" road, it is a road I have been down many times myself but the conclusion I have come to personally is, God isn't doing this to me but he is giving me the tools to live with it.

  Living with EDS yeah, that's hard but I get so much strength from my faith it is better then any tablet or painkiller I have ever been given from the doctor. I know to be well spiritually I need to go to church, I need to be around other Christians, I need to be prayed for and prayed over, I need to watch sermons and I need to listen to worship music and when I say "I need" I mean "I NEED" not 'could take it or leave it' casual Christianity I NEED these things and that's ok!! It doesn't make me a weak Christian it means I know what I need to stay spiritually well, you wouldn't say to me if I told you what medication I NEED to take everyday that taking those medications make me weak, of course you wouldn't!


Jesus says "Those people who know they have great spiritual needs are happy because the kingdom of heaven belongs to them" Oh Amen Amen Amen! If Jesus tells me that me knowing I have great spiritual needs means the kingdom of heaven belongs to me then yup that's going to make me happy! It makes me want to dance!

Sometimes I take a Bible verse and close my eyes and believe, I mean really believe and visualise God saying those words to me, perhaps the best example of this is in Daniel when he                                                                                  talks of a vision where he sees a man "His body was like shiny yellow quartz. His face was bright like lightening and his eyes were like fire" Daniel 10 verse 6 he says in verse 19 "He said, Daniel, don't be afraid. God loves you very much. Peace be with you. Be strong now; be courageous". I close my eyes and imagine my guardian angel saying "Chloe, don't be afraid. God loves you very much. Peace be with you. Be strong; be courageous" I meditate on those words. Wow, God does loves me very much and he wants me to have peace but he also wants me to be strong and to be courageous and like I said before "I can do all things through Christ who strengthens me." You see? Truth.

Having knowledge of my Bible is the best tonic because when I get overwhelmed I can build myself up with these truths. I cannot advocate enough how important it is for Christians to read their Bibles! My Bible has more underlined, highlighted, post it notes, even teeny tiny bits of card celotaped in then I can count and I would implore you to do the same! Doing that means that when I am in crisis whether it's physically or mentally I can flick through my Bible and easily find what I need and start declaring those truths.

Finding God in suffering can be difficult but if we equip ourselves with Bible verse and prayers we can learn to block out the Devil and his whispers of how weak we are and that we can't get through something. Sometimes we can't see God in a situation because as it says in Psalm 91 he has hidden us under his wing to keep us safe.

Even through all my suffering I am so grateful that I am a Christian and I have my faith. Even when I am isolated from my friends and family I am never alone. In those dark hours when I had pneumonia and we weren't 100% that I was going to pull through I still had faith, at times I was emotionally in crisis because I didn't feel like I could 'feel' God but on reflection he and his angels were there the whole time. I was never on my own because I had angels guarding my bed. I was surrounded by the love of those who love me and somehow they found the strength, God given strength to sit by my side and see me through some of the hardest hours I have ever faced.

Having faith isn't about knowing the plan it's about trusting that whatever the plan is that God has for us he has anointed our future and like it says in the Bible "I say this because I know what I am planning for you, I have good plans for you, not plans to hurt you" Jeremiah 29 v 11 - 12

Being a Christian with a chronic disease and chronic pain is going on a lifelong journey where the road changes and you hit bumps and have to change direction but it's doing so knowing all the time you are on that road you are taking one step closer to heaven. Is there doubt? Is there confusion? Are there days of hopeless feelings? Yes, of course but at the end of those days you find your way back to your Heavenly Father and he is always waiting there arms one wide, thrilled to see you and I don't know anything that is much better then that.

Sunday, 25 February 2018

Elhers Danlos, Pneumonia and me. Oh my!

It has been over a year since I wrote a blog post because I guess I found hiding from it much easier then writing it! I lost my confidence in my writing (of my blog) but I have also been concentrating a lot of time on my poetry book which is more positive then the lack of confidence I have had in my blog! It is almost ready to go which I am really excited about. I will be selling it to raise money to help us fund trips to London to see my specialist and for equipment that will restore parts of my lost independence as well as an off road wheelchair that will mean I can once again yomp through fields and woods which use to make my heart glow. (That's a pretty big dream though as those things are exxxxxpensive!)

I'm not going to apologise for hiding from my blog because I think we all have times when we need to hide from things and I wouldn't want to pass my guilt on to someone else to make them feel like they should feel guilty when they hide from things. Does that make sense? Lots of really big life changing things have happened over the last year and I have been desperately unwell. When I write I never plan what I am going to write I just lose myself to the rhythm that my fingers make on the key board and it's only when I read things back that I really take in what has come out.

I've been in hospital for a month on Monday after being admitted because I hadn't been able to keep any liquid food or drink down for 7 weeks. Over the past 2 years with my gastro issues as bad as they have been it's not uncommon for me to go 3 or 4 days a week with nothing but it suddenly stepped up a gear. I couldn't even sit up without support from my husband. I have never known fatigue like it, it seeps into your soul! Before that started I had had awful flu for 3 weeks which I never really felt like I fully recovered from but I took it on board as my condition worsening. I didn't know for a second that actually it was because I still had a chest infection and it had never gone.

This blog is a warning to any person living with chronic disease, if you feel worse persistently over a period of time you jolly well make a song and dance until someone listens! Do not go quietly to your bed.

One day (since I have been in hospital) I was suddenly surrounded by nurses and doctors and being told it was ok they were going to take an x-ray "X-ray I thought, I'm not in the x-ray department!" I was hazy, confused and I couldn't breathe. I wasn't in the x-ray department, they had brought the x-ray machine to me! I was in and out of it all all the time but felt like I was drowning, truly, drowning. The pain was bursting in my chest and I just couldn't catch my breath. Like I said I was drowning. The next thing I remember is being slide off my bed and told to raise my arms. I was hearing things and seeing things but I couldn't put the pieces of the puzzle together. I was in the CT scanner. Why I was there I had no idea.

Then I was back up on the ward with a nurse I had never met before surrounded by equipment and hooked up to just about everything! Next was a deep pain in my wrists, worse then any tattoo pain I've ever had! Next the other side, someone had told me they were taking my blood gas levels but that didn't stick at the time. By the end of my ordeal I had had it done 6 times, 3 each side with the bruises to prove it!

The nurse was milling around me all the time, talking to me, comforting me but I really didn't understand what he was saying to me or what was going on, all I knew was I felt like I was dying. I remember several different voices telling me I needed to fight it and for the first time ever I felt like I was fighting my hardest and just had nothing left to give.

The lovely nurse who was with me all the time looked into my eyes and told me through what felt like 3 foot of glass between us that they were worried my body would tire much faster then a 'normal' body and if my breathing got any worse I would need to have my breathing taken over and they would have to sedate me. I zoned in on the word "sedate" and immediately as my chest burned on fire tried to tell him all about EDS and how sedation just doesn't work on me, I'd had an invasive procedure done before and no one believed me until afterwards that I wasn't sedated at all. Suddenly how little is known and understood about EDS felt HUGE.

I have been fed through an NG tube all the time I have been in hospital but I have still been very sick at times and I over heard the consultant deciding to stop my feed because I could not start being sick but the next night came another voice "If we don't feed her she will not have the strength to survive this" I was too unwell to take on the enormity of that at the time but I can tell you it's haunted me since.

I saw so many different members of staff over the next few days and was so unwell that I lost names, which department they were from and what was really going on but I have snippets of memories that seem to shine so brightly in my mind.

Someone told me they thought I had had this chest infection since my last one before Christmas and it dawned on me how unwell, how dangerously unwell I will let myself become before I push doctors for answers and it really shouldn't be that way. You become so accustomed to feel so unwell and being told so many times that it is down to your chronic disease that you don't throw books around when you're feeling so much worse then normal. I had pneumonia. That shit is serious! (excuse the language!)

I felt so breathless at times and so frightened that I honestly thought I would never see my little girl again.

What has really lit the fire up me is what if that had been my daughter? I have met so many health professionals in the past month, I wouldn't be exaggerating if I said 30 plus people have told me they've never heard of it and every time I have thought I have to path the way for the people who come behind me. I have to talk about EDS until I am blue in the face so the next young person coming behind me who they meet doesn't have to explain their condition when they are feeling at their worst.

Every tear I cry over my ordeal I have to bottle up and think it is one less tear for someone else to cry. I am so passionate about raising awareness of EDS because I have to be. How can I not be. I know there are literally thousands of people out there feeling like they are going through their ordeal alone and we have to reach them and tell them there is a whole herd of zebras out here waiting to greet them and bring them into the pack!

A zebra living with a chest infection that turns into pneumonia because they absorb that pain as another layer of their chronic pain is not ok and it is not the life I want for the next generation of zebras.

This is another black stripe on my back but I have always said we aren't the black stripes we are the white stripes shining through. I believe if all of us took the time to tell just one person about the true nitty gritty EDS we can grow this movement and go global! It doesn't matter if we don't live in the same country we have to raise the profile of this disease worldwide.

I don't mind saying this experience has left me traumatised and I enclose this part because, well, actually I am embarrassed it has left me feeling traumatised and I bloody well shouldn't be. I find myself at night replaying it all in my mind and thinking "Thank the Lord I was where I am when I went downhill because I went down like a lead balloon and Thank God I was on a ward where all of the staff have taken the time to get to know me so when they couldn't wake me properly they knew something was very wrong" You can't help but play the "what ifs" because you're human and that's alright. The main thing is you tell someone so you can access the support available.

I have learnt from it though and never again will I not push harder when I, in my own body just know something extra is going on. The pneumonia came on thick and fast but I had had that chest infection for a while.

I am learning not to be ashamed of my pain around doctors and I am learning to grow into a more confident me that is willing to get into it with a doctor because I, me, not anyone else, I LIVE in this body, she's worn out, she's overworked and she's resilient but she is MY body and if in my mind I know something is wrong I WILL keep pushing it until we have exhausted all the options before just accepting it is part of my EDS.

Unfortunately all the investigations with regards to what's going on with my gastro issues has all had to stop whilst I recover from the pneumonia but I have the last big test (gastric emptying test) on Wednesday in another hospital about an hour away because I couldn't have it done where I am until April! Once that test is done we will be able to move forward with a more long term plan. I can't go on as I was. I deserve a much better quality of life then that and I finally have a great consultant who agrees with me!

I'll let you know how it all goes and what the outcomes are as and when we know and have had time to process it all. Many blessings to you all. xxxxx

Tuesday, 4 July 2017

This little light.....

It's so easy now a days to get caught up in everything in our lives that feels overwhelming, especially when you're suffering with depression. Another example of living with something that makes you feel so very unwell but doesn't change the way you look on the outside. Whether it's a physical invisible disease or invisible mental health if we aren't careful it can leave us feeling that way. Invisible.

A constant line in my blogs. I find these really hard to do but, I do it and I do it for the next generation so that we get earlier diagnoses and better community understanding. Apart from the severe pain in my hands, arms and wrists one thing I have never found difficult is writing. There are times when I have no words to say but will sit at a laptop and they come flowing out. Like an unstoppable force my fingers hammer away and I am liberated. There have also been times this year when I have been afraid to face the laptop because I fear what will come out. So many memories from the last few years that I haven't wanted to remember. Like the look in Tony's eyes when I was taken down for emergency surgery. By the time I went down for the surgery I had had a twist in my intestine leading out to my stoma for 4 days. I was delirious and had lost the use of my arms and hands, they just cramped and shook violently but I will never forget that look. Even in the fogginess of the pain and the brain clouding (which is the only way I can describe it) I will never forget that look but I have not wanted to face it again.

When you're a young man or woman living in a very elderly body the frustration can be like a forest fire rushing its way through a national park (reference many wonderful holidays in Canada for which I count myself very blessed!)

The last few years I have been so unwell physically that I've not really let myself FEEL the emotional side of living with Elhers Danlos Syndrome and it's something that has hit me like a sledge hammer this year as I have been digging very deep to find the strength to talk about it openly in public on my blog but when did showing our struggles become a sign of weakness?

Generation upon generation we were taught by society that showing emotion was a sign a weakness and thank God every generation has made it a little easier to talk more openly about emotional and mental well being but we have to keep going and I don't believe we are all the way there yet. I do believe that the tide is turning but we cannot become complaisant, we have to strive to create a society where we can say openly and without fear of judgement "I am barely hanging on and I need help." Even better 'I'm a bit worried about myself at the minute, I've been feeling really down for a few weeks now and need someone to talk too" So we stop the decline to crisis point for people living with long term mental health issues. 

When illness and disability hit our worlds shrink around us as we become more poorly, our care is cut or we just can't face to go outside. If you have been a social person before it is easy for people to make the assumption that you still have the large circle of friends you had before you became very unwell and you get lots of visitors and loneliness is definitely not on your list of symptoms. But we all know what they say about assumptions. They only make an ass out of you and me. The often housebound person with a list of regular visitors is far more rare than you might think. I don't want to go as far as saying it is but a myth but I will say for all the people that I have met who have regular periods in their life where they are housebound none of them have regular visitors. Online communities are a great way of staying in touch and interaction on social media is a great way for the chronically ill to stay in touch with friends and family but that does not substitute regular visits.

There are a lot of great carer groups in most towns that are aimed for carer's of the elderly but there seems to be a real gap in the market for young people that require full time care. There is also a lack of support groups aimed at people living with chronic illness and disability. It's only through my online work that I have met several people in my town living with Elhers Danlos Syndrome or Hypermobility syndrome and when I have asked if they would be interested in attending a group if I set it up they have all been incredibly keen. That is a post for another day though. Sorry I have wandered from my point.

I have always been a very social person, moving in many different crowds and making many wonderful friends as I have gone along but now in all honesty I have 3 or 4 people that make regular efforts to come and see me. (Excluding my parents) If I am going through times of being totally housebound the only consistent people in my life are my parents, my husband (who also doubles as my full time carer) and my daughter (my passion, my love and my reason for rising everyday to throw on clothes even if only to give the illusion that I have been able to be active that day)

Chronic fatigue is something no one can really put into words, for centuries we have been trying to put feelings into words but you can't ever really feel something for someone else. People think when you talk about fatigue it means that you're 'just' tired all the time and that is true up to a point but it actually goes so much further then being tired all the time. It is sheer exhaustion unaffected by how many hours sleep you get. For me I actually go the other way and the worse my fatigue is the worse my insomnia becomes because for me fatigue means my arms and legs ache even beyond my 'normal' muscle pain. The worse my insomnia I the worse my mental fatigue becomes and I find myself switching off halfway through a sentence, completely forgetting what I was going to say. I also lose track of words! I know the word I want to use I just can't describe it or find it in my large vocabulary! Simple everyday words. It can be quite ridiculous! With regards to my physical fatigue I often find that I cannot be active all day whilst Amelia-Rose is at school and then be active with her in the evening. I save up my energy so that when Amelia-Rose wants to play etc I am able too. It is incredibly frustrating!! I also know that Monday an Tuesdays are not great days because I often try to join in with as much as I can over the weekend wiping myself out for the beginning of the week.


What does all this cycle of illness and isolation do to someone? Well, in my personal experience it takes away little pieces of your confidence. It seems human nature to accept responsibility for everything and oh how great we are at blaming ourselves!! Ignore the rational "They have their own busy lives" and the more loneliness eats into you the more you hear yourself say "I've done something, they don't come around anymore because they don't want to see my suffering, and of course it's my fault I am suffering because it's my body therefore my responsibility" I say no. It is NOT your fault that the moment genes met genes (ew! ew! ew! Don't make me think about that! My parents NEVER did that! Well dur! Of course they did and they probably enjoyed it as much as you do!! Hahahahaha! Sorry, just putting in a little humor! Whilst totally freaking myself out!) something within your structure wasn't quite right creating your chronic disease. This is no more your responsibility or fault then it is your fault that it rains. Do you accept responsibility for the weather? Of course not so please find a way to release yourself from the shackles of blaming yourself for your chronic illness or disability. Not easy I know. I have found writing letters to myself a really great tool in helping me be released from that burden of responsibility.

Sadly people living in the 21st century are totally overwhelmed chasing after 'perfect' and the idea of 'perfection' that we perceive to be true. I must get the washing in, the kids lunches done, tidy the house, pay that bill, change that bed, go to that group and for many people work too. The pressure of 21st living is immense but if you want to do more to give back then I urge you to contact that neighbour/friend/old friend/elderly member of your community who you know doesn't get much opportunity to leave the house and ask if they would like a visitor. If they say no the first time it doesn't mean it will always be a no so keep asking. It can take a while for some people to come out of their shell but that doesn't mean they don't want to. Admitting you're lonely is very difficult with it being tied up in a nice bow called "the fear of rejection."

I recently invited a lady I know from church who I know has been suffering with her health and experiences a lot of time alone around for a cup of tea and we had a wonderful time. In fact she was so touched that at one point in our conversation she began to well up.

I will openly admit that sometimes I can be absolutely desperate for company but one of the biggest embarrassments for me is when our house is chaotic and untidy. Not perfect. Not an Ikea showroom, I mean really, come on now.  I don't get to go round to other people's homes very often and when that happens you don't get to see that this is the reality for a lot of people! Although I know it to be true I don't think that any of us can deny that once we have witnessed something to be true it is much easier to accept. When I was well and fully able I loved cleaning and organising so suddenly living in a chaotic house does neither Tony or I any good. Don't get me wrong we aren't talking an episode of hoarders here not nearly but because I was recovering from surgery when we moved in (I hadn't even seen the upstairs when we signed our tenancy agreement) and have pretty much either been facing or recovering from surgery or in and out of hospital ever since I have never got the cupboards organised. It is difficult to find new places to put things when I haven't had the physical strength to take the things we no longer need or use out of rotation! Something I regularly did when my daughter was a toddler.

The great shame I feel about this is enormous but over the past few weeks I have been talking to myself differently (we all do it!) and driven by my deep urge for it not to be so hard to ask for help for the next generation to ask for help I took to Facebook and posted a very open honest post asking for people to come and help me organise the cupboards so on the days I do feel well enough and pain free enough to do craft, paint, whatever then I can. Little things like this really help fill the lonely hours and help you look after your mental health when your physical health is overwhelming.

In a disabled home things need to be accessible and organised. From the front door to the toilet and all that is in between and living in a home that isn't is incredible frustrating. There is a total lack of accessible housing (bungalows) in my county. All the bungalows that are on the social housing register are advertised for people over 65. This is true in many counties around the UK. Moving around needs to be easy and to be honest often it isn't so having order in storage spaces becomes even more vital. I was thrilled when various different people (some of whom I haven't seen for years simply because we fell into different social groups when our children started preschool, school etc) offered to help.

I do believe that most people are innately good, we just all get too wrapped up in our own lives which is understandable and totally forgivable. I know it can be very different in different communities which is another reason I feel so blessed that I live in such a friendly community but if you ask for help you may well be surprised by how many people will come forward because they want to help.

It's ok to ask for help, it's ok to tell people when your suffering is getting away from you and you need support. In my experience the more isolated you are the harder life gets but then you don't want to admit that life is overwhelming so you loose your voice altogether and remain silent. Breaking your silence is difficult but it's amazing how liberated you will feel because of it. 

There are billions of people on the planet and you may well say that the last thing the world needs is more noise but what if it's your voice and your voice alone that is the thing that will give another fellow human being the will and fight to hold on. What if it is your words and your words alone that can sow a seed of hope in someone who otherwise feels that their life is a hopeless life. What if it is your unique experiences that can change the way of life for hundreds of lives? You were blessed with a voice and I urge you to find the courage to use it. Even if you're not ready to share it with the world yet that's ok but talk, even if it's to your cat! Talk. Let it out, it's amazing how less chaotic thoughts become when we release them. When we can acknowledge our feelings and put them into words suddenly they can become less or more overwhelming. Don't forget overwhelming isn't just a negative words. It is also an immensely positive one. "I was so overwhelmed with the feel of injustice in the world that I knew I had to do something", "I was so overwhelmed with the feeling that I had to paint that I did it" "I was so overwhelmed with the feeling of righteous anger that I posted online posts, put leaflets through doors and spoke to anyone who would listen until...." When things overwhelm us it is often because they have become so big inside that they have to be let out.

I am unashamed to say I have done ALOT of crying recently. It's amazing that my husband's chest hair isn't as long as Rapunzel's with the amount of water it has had poured onto it recently but each of my painful tears have released a painful cry I have been holding in for far too long. I think to cope with the last few years I have turned in to a classic "Push it down" er. Before writing songs and poetry was how I processed my feelings but when you're very very unwell physically and in and out of hospital you often stop yourself feeling because you're doing all that you can to survive physically but at some point that has to come out and it is ok to cry. This is a message especially important for men to hear. It is ok to cry.

I have been trying to get out the house more lately, it's exhausting and my pain has increased greatly but I know that I have been suffering with depression this year as the 'foreverness' of my condition has finally sunk in but I do not believe that I will be depressed for the rest of my life. I still have hope. I still know I have paintings to paint, songs to write and sing, things to say, hope to share, awareness to raise. My condition has affected every part of my life but I am so blessed that I still have this wide open future ahead of me and as long as I have love in my life I know I will keep going. As long as there are other people out there suffering alone I know I will still try to fight for their lives too. If only to bring them hope.  

Next year amazingly my husband and I have been married for 10 years and I cannot wait to see what the next 10 years have in store for us. I'm not deluded, I know there will be pain, I now things are going to be hard, physically I will more then likely get worse but I also know we have the strength to face it together. I am so blessed that I have found my soul mate, my one and only, I love him with such wholeness and so deeply that I know everyday I will try to make him smile no matter how hard things get. I miss his smile when thing are hard. I miss his laugh when I see the worry in his eyes. This wonderful man who was flying in his new profession and walked away from it all because he said if someone had to care for me he wanted it to be him.

I'm working on my happy list as mentioned in the last post and it's amazing how this has ignited my creative self again. I feel like I could pop with creative vision some days and it's great to have that fire back, I am dreaming again. I don't need great physical health to be creative. A lot of creativity can be done from the confides of your own home now a days and still released out into the world via interne advertising. The internet is a great blessing for the housebound and physically challenged. I'm vlogging again and am going to try to write more on the laptop. I have always loved putting pen to paper and the 100s of years of tradition in that but writing with a pen is one of the most painful things to do with my wrists so with a little mind set change there's no reason why I can't type instead. Yes it looses some of that romantic energy but disability is about adaption so I am going to try to embrace it further not only to write my blog.

I may not know what my life's purpose is yet but that's ok. My life is about the journey not the destination.

Thursday, 1 June 2017

Don't take away my dreams

It's difficult when you're suffering to consider what life will be like in 10 years time... 5 years time...heck even next week!

Living with a condition that leaves you in constant pain and often terrible fatigue it can be difficult to consider what your future will look like but it's something that I have to remind myself of.

 I still have dreams and enough determination to fight for them. I'm finally unashamed to say that I have been suffering with depression this year and there are days that thinking about the future is just too overwhelming (I do not mean I am suicidal but anything beyond that day, that hour, that moment is just too much) but it is on those days that it is so important to dig as deep as we can and too remind ourselves that we do have a future and we do have dreams.

Thanks to Pinterest (and don't get me wrong I do really enjoy Pinterest, especially as a creative person!) I know that bucket lists have become a huge trend in our society but I must admit I struggle with them. I think it's wonderful to have a board of all the things that you would like to achieve in your life but what happens once you have created that board with the best of intensions? Does it spur you on or does it just become a board in the bedroom that gets over looked? Perhaps worst of all does it become a constant reminder of the things that you AREN'T doing? 


I am an innately positive person, glass half full, silver lining, after the rain comes the rainbow but 
I know for me personally at the moment I couldn't bare to have a bucket list staring at me when I lay on the bed in agony too exhausted to move, saving all my energy and strength to be the mummy I want to be when my daughter gets home from school. 

There are days where I have so much that I want to do but it's only the hour before my daughter gets home from school that I can really 'get going' because I know if I do all the things that I want to do I simply won't have the energy or ability to do all the things that will give my daughter the childhood I would like her to look back on when she's an adult. What I absolutely do not want her to look back on is a childhood where I was never able or well enough to do anything with her. As parents we all make sacrifices for our children but when you live with a chronic illness those sacrifices can be even greater.

I've had to change the expectations of the mother I always wanted to be (going on rambling walks in the countryside, sneaking off for the weekend to go camping, building dens in the wood, dancing and jumping on the bed) to the mother that I can be today but on that long, sometimes very emotional journey I came to the realization that actually the one and only thing that really matters is love. 

Do I love my daughter any less because of my condition? Do I like the time we spend together any less? Has my drive and determination to be the best role model I can be for her changed? Of course the answer to all these questions is no. None of that has changed. In fact, it is all 10 fold bigger because of the extended periods of time I have had to spend in hospital away from my daughter or stuck in the house recovering from surgery whilst life goes on around me. 

It's amazing how many things you can do from a hospital bed no matter how awful you feel! We've decorated ostomy bags, done crafts, made story books, done puzzles, played barbies, played doctors and nurses and when I've been at home recovering from surgery we borrowed a spare single bed from my parents so I moved downstairs able to be involved in day to day family life without being shut away upstairs. 

We also chose a beautiful selection of funky wooden buttons that I sewed onto her poloshirts so if she was at school and felt sad or missed me she could feel her button and know I was with her, thinking of her and loved her very much. 

If I didn't have this condition I never would have been away from her for perhaps more then a weekend when she went for a sleepover with her grandparents, I wouldn't know what it is like to be away from her, to miss her and feel so inadequate, to want to run home to be with her. My condition has made me love her with more determination and passion, it has reminded me to make sure I show her that love and tell her how I feel, it has made me appreciate every moment I have with her and never take that time for granted.

Not one to usually swear but one day instead of a bucket list I decided to have a f&^k it list! 

My f%^k it list consists of all the things my body tells me I can't do anymore but I am going to do anyway. Some walls are built to keep you safe and some are built for you to break down. Of late though I have forgotten that, I have read all the signs on the wall that say "you can't" "you won't" and believed them. I have stood in front of that wall for far too long and doubted I have the ability to break it down. I have considered that because I cannot break it down in one almighty strike I cannot break it down at all. But that wall does not have to be broken down in one almighty attack it can be taken down piece by piece, in time and slowly.

There is a fantastic documentary about a lady called Lara Bloom (who I highly admire and gives me that kick up the butt to keep going in my mission to raise awareness of invisible disease when I need it!) Lara also suffers with Elhers Danlos Syndrome and decided she was going to complete the London Marathon to help raise awareness for the disease and fundraise. 

The documentary called 'Issues with my tissues' follows her on her road to success which I would encourage you to watch. Lara did not suddenly become a full time runner or distance walker overnight but she had that wall in front of her telling her someone with our condition could not complete the London Marathon and she broke that wall down one brick at a time.

I think we can all learn a great lesson from Lara, despite our broken bodies it is our right to still have dreams. This disease is debilitating, it is life changing, it takes away so many of our expectations of the life we thought we would have and the life we had planned out for ourselves.

 My Mum wrapped it up beautifully for me in one sentence the other day "You were never meant to be disabled, you were meant to be living your life as a funky hippie somewhere with a gaggle of children" and she is right. My infertility is by far the hardest thing I have had to learn to live with. But the other thing my family and friends constantly remind me is that I am still me.

My f&^k it list is about carrying on and believing in myself despite the limitations of this disease and what that means for my life. Elhers Danlos Syndrome is sort of like the Autistic Spectrum in that there is a huge range of symptoms and how people are affected by it. Some are high functioning and manage to still have a full time job and some live a lot of their lives in hospital.  Like a lot of other invisible diseases.You never really know what kind of day you're going to have and although many with EDS (or Hypermobility Syndrome) become pros at relocating their joints there's always that little thought locked away in your mind that you may have to go to A&E because you can't relocate a joint or do more then normal damage to yourself.

 I have to use a wheelchair so my EDS is visible in that way but for a lot of people it is a totally invisible disease and there are hundreds of diseases out there that have huge debilitating affects on peoples lives but because they look healthy people assume they are.

My F%^k it list is about knowing I may not ever be able to do something but trying anyway. For me one of my biggest targets on my F%^k it list is to complete my degree with the Open University. Before I got unwell it had always been my intention to get a degree in Childhood and Youth studies which I would use as a gateway into training to be a higher level teaching assistant and the dream was to work in my daughter's school as a teaching assistant or a one to one teaching assistant (as all my experience is working with special needs children) then progressing to be a higher level TA or family support worker.

I worked for 4 years when my daughter was a young baby/toddler to get my degree but 2 courses away (The last course meaning I would graduate with honors) from it I accepted that I wouldn't get to graduation and be so proud of myself because in reality I simply couldn't do the course anymore. I was too unwell.

That fire has never gone out though so a few months ago I applied for a prospectus in counselling and psychology and it arrived just before Easter. 'That' voice of depression in my mind told me I would never be able to handle the work load or attend the tutorials (which are only once a month because the idea is you do everything at home and the tutorials are not compulsory) and I believed it so put the prospectus away but that's the whole idea of my f-k it list. So the other day I pulled it out the cupboard and have decided that I am going to apply for next year and just give it a go.

Another thing on my f-k it list is to launch my line of greeting cards that I have been developing over the last 18 months but again not had the confidence to do. Last month though I decided that so what if no one buys them and it never goes anywhere at least I know I tried so I've been beginning to take the wobbly baby steps to do so.

Depression is like a black cloud that falls over you and makes you believe every bad thing you have ever thought about yourself. I personally do not know anybody with EDS that has not in one way or another battled with some level of depression. It's difficult not knowing from one day to the next how your body will be.

You don't just get over depression in one day, it isn't a question of one day you have it and one day you don't. I know it will take a long time to recover from but I am determined to do it.

I can't deny, it is difficult to live with a chronic disease and not concentrate on everything you can't do anymore but we must hold on to our dreams, we have to hold on to our faith that things will get better and be brave enough to tell someone when we aren't coping. It is so hard to post posts like this but I do it for all the other people out there who live with an invisible disease because it has to become OK for us to talk about how hard things really are without shame.

Whether the invisible disease is mental, physical or both we need to break these taboos around invisible disease so that we can talk about them. It isn't easy to find the words some days but just having someone to sit with you and make you laugh despite how bad the pain is can make you feel easier. 

Getting diagnosed with a chronic disease isn't the end of the journey it is just the very beginning and we need to support these members of our society. There are so many physical symptoms we have to live with with a disease like EDS that the psychological ones often get over looked because people don't want to talk about how they aren't coping because they don't want people to look at them any more differently then they already do.

The only thing we really want is to be treated like we were before we got sick, you want to be involved in things with all your friends still, you want to be able to go out with your partner still, you want to be able to go crazy and have fun with your children but it just hurts so much. And we aren't talking I stubbed my toe pain here people, this is all over your body screaming on the inside pain. We may well look well on the outside but on the inside is a broken body and at times quite often a broken heart.

I want to tell everyone that I'm OK, I want people to believe that I'm OK because I want to believe that I'm OK. I don't want this disease ripping through my body taking me down bit by bit. I don't want to remember what life was like before EDS took over because I don't want to accept that this is my reality now. I don't want to accept that this disease has taken so much from me, I don't want to remember back to the days when I could run and jump and not be in pain all the time. I don't want to think about all those plans and dreams that I had for my future that physically I won't be able to do.

But we have to hold on to them, we have to grip them and not let go, we may have to build new ones and change them slightly but we have to hold on to them.

 EDS is a horrible disease but it will not win. And having bad days isn't losing, it's not giving in, it's being human. Struggling with depression whilst living with a chronic disease isn't losing. It's being human. I'm saying that twice because I want it to stick!!

  I don't know anyone that could live with what we live with and not get down and feel desperately sad sometimes. No one deserves to feel the way we feel physically day in and day out. NO ONE 'deserves' chronic illness it is just something that some of us have to live with and we need help. Again. That is a really hard thing for me to say but I'll say it for all the other people out there who suffer with chronic disease. We need help.

We need for you to still treat us like human beings. We need for you to pick the phone up and ask if we're alright, we need for you to remind us to believe in ourselves. We need that bit of extra support and trust me it is really REALLY hard to admit that.

I am always telling people I'm alright when I'm not but what do you say to someone when they stop and ask in the street if you're alright? Even answering a simple question like "How are you?" is difficult!! Do you really tell them that it took you 2 hours to get ready. You couldn't do it alone and your husband had to help you get dressed? Or do you just tell them that you're OK?

Mindfullness is a great tool to help you learn to live with chronic illness, which I will explore in further details in an upcoming post. In essence you just concentrate on one moment at a time and when I am out the house in my wheelchair and am asked how I am that is how I feel, not only ok, bloody fabulous I'M OUT THE HOUSE! 

It isn't always as simple as that though, there are days when you can't do that and I'll say it again THAT'S OK. It is nothing to be ashamed of YOU'RE human!! 

I firmly believe that when people ask you how you are and tell you you are looking well it comes from a place of love and kindness and similarly I understand how difficult that can be to hear on bad day. No matter how desperately hard things get sometimes though my dears please remember you have so much potential. 

At the moment around many carparks and pavements the Poppies of the year have started to open in all their stunning glory, out of bricks, concrete and cracks these hard tough spaces spring beautiful flowers that for all intense and purposes should not be able to grow where they are. 

You are the Poppy, you're beautiful, you're hardy, you are something to be admired and most importantly you come back and keep growing year after year. 

Wednesday, 26 April 2017

It's time for some truth

Ok guys, over the past few months I have written, left, written, deleted and left again. I have tortured myself about my blog. All I've ever wanted to do with this blog is reach out to all the other people around the world who suffer with chronic illness and pain to tell them the way they are feeling is OK, they aren't alone. I can't lie though, it's hard, it's hard to dig deep into your own reality and face it.

Your body is broken.

 All of those dreams you had, all of your plans, all the things you thought you would be. Gone. And yet, this has to be done because as Tony, my rock, lifeline and light of my life keeps telling me. "Chloe, all the other people out there who live with a disease like yours must be going through what you are. It's OK to be honest. You can do this, you want to make a difference and you can".

I have been ashamed though, ashamed that I have hit a place where suddenly I'm not coping anymore. I curl up in a ball and I cry. "This shouldn't be my life, what happened. I've never let this disease take my 'self', my grit and determination to not let this disease 'win' is what has got me through everyday. Of the pain, the loneliness, the "Holy crap what the f did I do to deserve this?" moments of fury when I want to rip my DNA out of my body and get my body back.

I've never written like this before but I know there are people out there who will, who have or who are having these same feelings and my message to you is. You are NOT alone. You are brave and beautiful. You are loved and strong. You are not responsible for this. You did not do anything to 'deserve' it. You just got a really shitty straw.

It is OK to have days when you cry, days, when you just need a friend but you're too scared to ask because saying out loud "I'm not coping" is harder then laying there, alone, wiping your eyes.

It's OK to be honest with people, this isn't about being judged. It is about being loved.

I want to tell you a story.

One day, off we went in the car when Ed Sheeran's "Thinking out loud" came on the CD and Tony turned to me with tears in his eyes and said.... "This is my song for you" the first line....

Sorry, side bar.  Wow, talk about fate, hand on heart no word of a lie my adorable friend, who I class as family and is like a little sister just called because she is at an Ed Sheeran concert and he was playing 'Thinking out loud'!!! What are the chances of that! It's incredible!

Anyway, sorry, back to the story, the first line of the song is, "When your legs don't work like they use to before, and I can't sweep you off of your feet, will your mouth still remember the taste of my love, will your eyes still smile from your cheeks" and so it carries on, in my opinion the most romantic loving song of the last 10 years. Of course I instantly started to cry because that's the one thing this disease has never done. It has never taken away the intense love I have for Tony. We have been in the most frightening, tragic moments and some how managed to make each other laugh. We have a personal signal to each other to say 'I love you'. We have held hands and cried together, we have laughed in the face of intense moments, we have gripped on to each other, not wanting to let go of one another when we have faced some of the scariest moments.

This is reality people.

This is what it's like to live with EDS, this is what it is like when you're told after a surgery that you have an infection or that the surgery they had been trying to avoid was now an emergency. This is what it's like to be wheeled away, down a corridor knowing you're about to have an operation that they don't know how serious it can become and you could wake up with an incision the entire length of you abdomen. (which Thank the Lord I didn't, I woke up with 4 incisions that were smaller then what they had warned me would probably happen) And this is what it is like to do it with your soul mate.

Love, love is what makes me hold on. Love is what makes me reach for the laptop and think, "Ok, this is it, time to let your fingers hammer on the keys not really knowing what is going to come out" Love is what makes me believe that no matter what, WE will face this together. Love is what gives me the courage to do this, be honest, admit that yeah, you know what. This gets shit serious sometimes but all I have ever wanted to do is turn my experience into something that will help someone else out there who perhaps has been curled up in that ball, surrounded by tissues. Desperately inside willing this disease away, not just asking but begging God to take it away.

I have a daughter and I will show her that I can do this because I love her so intensely that I will face any pain and push it just to play with her and make her laugh.

You know what though, the thing I say to people, "If I have to suffer to help someone else in my position hold on for another day then BRING IT ON" I will turn my suffering into something positive, I will be brave, I will stop listening to all the things I tell myself about being a burden, about feeling so guilty that my family have to worry about me like they do, I will sit and talk to myself as if I am a friend because I can tell you this, I would never tell a friend whose body is in pain from the moment they open their eyes until the moment they drift off into a sleep, (if they are lucky) that this is their fault. I would never say "You are a burden"and I urge you, please, please take my advice and do the same. Talk to yourself as if you were talking to a friend.

This life is hard, physically, spiritually, emotionally but you, you are a warrior. You are a hero, you have the power inside of you because although your body may be broken and may have taken away your hopes and dreams you can still have those hopes and dreams because you deserve them. You deserve to have them. You may need to adapt them and change them slightly but having a chronic disease does not mean that you can't dream that one day things will get better. It doesn't mean you can't have a life it just means you have to really fight for it and I understand, trust me, I understand that is really hard and sometimes heartbreaking but you still have so much to offer the world.

Sometimes in life we have to reach the bottom because then the only way to look is up, look up, please, look up.

I'm holding my hand out to you and telling you, you are not alone. I am setting up a new Facebook page and email address and though sometimes I can't reply to comments for a long time I will try.All the details will follow very soon. Don't withdraw from the world, I know what it's like to live in a room, 4 walls, 2 pillows and agony that rips through your body when you move, a shoulder that dislocates when you cuddle into the person you love. Fear at moving a leg too far because your hip pops out and then when it does. That deep burning pain that follows. The breath taking moment of "I don't want to ring an ambulance, I can do this, God get in, please get in, YOU B%$£"%% GET IN, oh Lord the pain, take away the pain, please, I'm begging just please get in, smile, don't forget to smile, this has to be ok, show your child how strong you are, don't worry them, don't show them how much this hurts, I have to protect them from this" I know what it's like to every moment of the time you're child is with you digging so deep to protect them from this reality, playing, smiling, laughing because you will not let them know even though you are so exhausted and in so much pain inside. That is a miracle.

I am telling you I understand. I am telling you that it's OK to have days when you don't feel like you're coping and think back to the days when you would jump on the bed singing into a hairbrush just being a fool because life is for fun, remembering that you've never fit into the mold because being individual and you is far more fun then conforming and then pausing to remember. "I can't do that anymore" but my friend you can. You are you, you are all the things you have been through and you are all the things you will go through, you are every moment of your life that has bought you this far and you are strong enough to do this.

So here it is. Your future, because one thing this disease will not do is rob you of a future. It isn't going to be easy but you are a fighter, you are a warrior, you will laugh in the face of everything this disease will throw at you because you, you are a champion.