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