Friday 28 August 2015

An update from Chloe!





Dear Friends, 

I'd like to start by saying a HUGE thank you to everyone who has donated to our cause or shared the page. I am quite blown away by the names that have been popping up! Up to and including the lady who allowed me to clean her already spotless house so I could earn my Brownie badge!! Thank you to them for supporting me in two vitally important life events. The first of course being receiving my hard earned Brownie badge! 

I feel so incredibly blessed that everyone is being so kind by sharing the page and often writing the most beautiful few paragraphs to explain why they are asking people to contribute. 

Amelia-Rose only has a week of her school holidays left and I cannot believe how quickly it has flown  by. I knew going into the holiday that it would go quickly but I had no idea it would be this fast!! 

I have fought very hard to be involved in as much as physically possible with Amelia-Rose during the holidays as I was determined not to miss out. My goodness though it has been tough. I have experienced for the first time the feeling of ''I'm not sure if this is worth it''. Of course the answer is ''it absolutely was'' but there have been times when I have been sat somewhere cold and wet with my joints aching and tummy hurting watching this that or the other thinking ''Ooooh, I'm not sure, I could be at home in the warm!" 

I think I need to learn it's ok not to do everything. No parent does everything. Most children only have one parent with them most the summer as the other is working so it is ok for me to miss things. For me now not joining in is a failure. I guess because I'm not doing something because I can't not because I don't want to which makes it a whole different ball game. 

It is hard as a disabled parent to let go of what you can't do. You get so use to adapting everything all the time, making small changes here and there that when you face something that you just cannot do it can feel like a wave of frustration, anger, anxiety and sadness washes over you. It's the ultimate defeat. 


What I need is to plan ahead so I make the decision not to do something and I don't feel as if it is being taken away from me. 

Tony would tell you I am battling with myself at the moment. I keep talking like I have any control what so ever over my illness. For instance the other day in bed I declared that I was going to make two chocolate cakes (one for the milkman for going easy on us with our bill and giving us time to pay it off and one for my family who were arriving for a week's holiday here) go down to our allotment and tidy Amelia-Rose's bedroom. 

First of all though I needed to have a bath. Tony ran my bath whilst I got myself ready. It is getting harder to get into the bath but the bath board helps. The bottom of our bath is extremely slippery though which is lethal. I've slipped and hurt myself many times. This is the perfect example of ways money from go fund me could help make adaptions around the house that you used to be able to get on prescription from the occupational therapists but now can't as the funding was cut.  

Last year I was told I would be given a trolley which would solve the problem of how once I have cooked dinner I can get it to the table if Tony isn't around (because 9 times out of 10 he is down the doctors sorting prescriptions for me!!) the standard ones they give people you push like a normal trolley and are not designed to weight bare. That trolley would become my walking aid so would need to never tip up. Impossible expectations for the old trolleys.  

I was so excited when I was told about it but it turned out they actually didn't have any in storage that became walking aids and I couldn't get the funding for a custom made one. *sigh* So we are back to me having to serve up and hobble along very unsteady with hot food in one hand trying to lean on my crutch and holding the other crutch. Easy it is not. 

By the time I got into the bath I was absolutely shattered. I couldn't wash myself because my arms ached too badly. I lay there exhausted watching each of my goals for the day float away with the steam. I needed help washing which is a huge point of sensitivity for me. I know I am at the point now that I need help with my personal care (getting washed and dressed) but I don't want Tony to help me because for me that crosses over the line too far from husband to carer but he is my carer now, he left work to become my full time carer therefore I need to accept his help. 

I don't want him emptying my bag or doing my catheters when I am too weak to get out of bed (which has happened recently) but similarly I don't think any of us could cope with someone from outside coming in to help us.

We do need help though. Without doubt. This is something I have learned in the past few weeks is that we need a lot more outside help then we get and we need to accept that we cannot do it all. I expect it is much harder for Tony because he is a traditional man. He protects his girls and he provides for them. Having already lost the ability to provide financially because of my illness I think doing it all alone has been Tony's way of showing the world he could. 

Now though we need help. We need people to come in and do a deep clean with us. On the surface the house is often very tidy but beneath the surface and it's chaos which seriously stresses me out! 

Admitting you need help is huge though isn't it? Is there really anything personally bigger to do then ask for help?

Health wise thing aren't fantastic. I now use disposable catheters as my bladder has ceased working but they leave me sore and an infection I had was horrible. This sounds bizarre but I keep being shocked by how awful I feel! Literally I will wake up or do something and feel so rubbish and it shocks me. It also shocks me how little I can do. 

On an increasing basis things that I did all the time before or did often I now can't do. Typing this has taken me 5 attempts because mentally I can't sit for long and process things. My hands would also not allow for me to type for so long without punishment. 

When I think back to where I was this time last year I was much better then I am now and then I had even more ''stuff'' inside me and was more physically able then I am now. Last year my health declined to the point where I couldn't even lift my head off the pillow for long. I certainly couldn't get out of bed. I suppose my fear is that when I became that unwell I was coming from a better place then I am now and if I were to dip to the same degree goodness knows how bad I would be! I hope that makes sense! It's the kind of irrational thing that goes on in my mind! 

I keep having dreams where I get offered my surgery date as the NHS decide to step in and do the surgery in the private hospital just to get it done! I always dream up until the point where the receptionist checks us in. We go up to the counter and she tells us there has been a mistake and she doesn't know anything about me. It's horrible! I wake up steaming hot with butterflies in my tummy and anxiety ripping through my chest and down my arm so it feels like I am having a heart attack.

People look at me when I am out and about and assume I am so much better then I am. I always like to do my hair and make up before I go out but it does means people are deceived by how well I am.  They don't need to look far beneath the surface to see. 

For the first time ever I have been able to accept that I am indeed suffering. I am someone who suffers. I always thought that was something to be ashamed of, that I should hide it encase people said I was making it up or Dr's wouldn't believe me but really I am. At the moment I am at a time in my life and I am suffering. I guess I just have to try to wear that badge with a little honour. I am facing my suffering. It doesn't make me less of a mum or less of an anything if people take the time to understand that for me x y and z it just not possible because I am not well enough. 

It's a funny thing being sick and disabled. You would think being one or the other was enough but not for my body! Haha! People can see my disability. They cannot see my illness. That is invisible. That is the reason I started my youtube channel and my blog. To raise awareness of this disease for other men and woman and to show the world what this sick disabled woman could do. I wanted to inspire young women to believe in themselves and go out in the world knowing no matter what illness or disability they have they still will always have something to contribute to the world. 

I am sorry that in this up date I have jumped from subject to subject. I have always had a passion for writing but at the moment due to my 'brain fog' or 'mental clouding' my standard of writing has disappeared down the toilet as I have tried to write for my blog! I have 3 unfinished actually very good blog posts! Please forgive my poorer standard of writing! I will share the others with you soon. Including the story of TJ Tabitha-Jane the miscarriage we experienced 4 years after trying and 2 weeks before I first went on the crutches. We are finally ready to share that story. 


Many blessing 
Chloe 






Wednesday 22 July 2015

What is it like to live with Ehlers Danlos Syndrome

Today I've decided to link my youtube channel instead of writing because my cursor keeps highlighting and deleting what I have written which is driving me mad! Just writing this has taken 4 attempts and I had written 3 paragraphs but lost it all!! To be honest the videos were so spontaneous I think I've said it all. I was surprised by how emotional I became but I have chosen to share them because I want to encourage other sufferers to not feel ashamed or embarrassed by their conditions. Especially the hard times.

It's a frightening thing to be so vulnerable on youtube but if these videos help just one person feel less isolated, alone and misunderstood then making myself vulnerable is worth it.

I dream of creating a youtube community where people can support and understand each other and inspire one another to carry on the fight for a better quality of life despite their illness.


https://youtu.be/S60424Y3NEo

https://youtu.be/gkplmyyy-Y8


https://youtu.be/Zz0bUrA1BoY


https://youtu.be/CUJ86u-UhiM

Saturday 11 July 2015

The joy of the benefits system.

Well, to say these past two weeks have been stressful would be a huge understatement.... 

It has been tougher then tough.
 

First came the letter telling me that I had attended a medical exam and the assessor had deemed me fit to work and as a result my claim for employment support allowance had stopped and I was being taken out the system. Despite the fact that each time they've requested a medical certificate I have indeed sent in a medical certificate I only every received one payment which was back in April. Since then Tony and I have been surviving on my disability living allowance and his carer's allowance (his being £62.00 a week and mine just about covering our monthly bills, not exactly what it is designed for but needs must if we didn't want to be £300 over drawn every month with no electric) I have always vowed that my blog and youtube channel will be honest, an honest account of what it is like to live with chronic disease and disability and as much as it pains me to write this and as embarrassed I am to admit it things have been so hard most of our food we have gotten from the local food bank. I can't believe that things have gotten that tough but they have. I cannot put into words the guilt I carry around about that. 

When you are genuinely unwell and reduced to living on benefits because you have to rather then you want to the whole system makes you feel like a social outcast and that you should be utterly ashamed of yourself and when I sit and really think about the guilt I carry around I have to remind myself that the only thing that I am truly guilty of is having an incurable disease. I try to talk to myself (I know that sounds a bit mad) as if I was trying to comfort someone else in my shoes. Then I try to listen. 

                                                                         
Anyway, back to my ESA claim. I filled in their 22 page health questionnaire and handed it in at my local job centre, not an easy task when you have crippling hand pain due to dodgy ligaments and early on set arthritis but I did it none the less. I'm so glad I went to all that trouble when now they have shut down my claim and can't carry the questionnaire over to the new claim. I can hear you asking how I could ever fail a health exam with my extended and complex health needs and disabiliaty but here's the thing. I never did attend a medical. I was never even invited to attend a medical. When I rang the helpline (and eventually got to talk to someone after being on hold for 37 minutes) they admitted that it was a clerical error their end but their was 'nothing they could do' and I would have to make a whole new claim which could take up to 3 months to process. 

Again with the painful honesty, I cried down the phone to the poor woman on the other end and when I hung up I sobbed into my hands. Really sobbed. 

The following day I planned my day to totally dedicate it to making a new claim again, I dug out all the relevant forms and letters that I knew I needed to give them (hospital addresses etc). Then the post arrived with a letter that would wind me and bring more stressed out tears. 

I received a letter from my local council telling me that the department for work and pensions who are in charge of the ESA system had been in touch with them and told them that I had been cleared for work and as a result they were suspending our claim for housing and council tax benefit. Honestly the stress and anxiety that letter caused and is still causing is enough to drive anybody insane. We are now down not only the ESA but also my housing and council tax leaving us with full rent and rates to pay until this mess gets sorted out. 

Once I calmed down I made the call to the ESA people to put in a new claim.  I was on hold for 46 minutes this time and when I did eventually get through we got halfway through the new claim when the woman's system crashed and she vowed to ring me back within 10 minutes. 5 hours later and I rang them again. After being on hold this time for 25 minutes a message came over to tell me they were now closed and to call again tomorrow (or something along those lines) 

So now we go into the third day. I tried ringing my council but after being on hold for what felt like forever I decided to hang up and call the ESA line again as that felt most important. This time thank goodness I did get through and managed to get all the way through the claim. 


Although the ESA is a joint claim for Tony and I as I am technically the one unable to work I am the one who has to make all the phone calls and fill out all the forms. How can this possibly be right when you're dealing with a benefit that is given to people who are unable to work through disability or long term illness? Are our lives not stressful enough? Do we already not have to strive harder then anyone else to not quite ever be up to par? Why would anybody thing it is a good idea to put so much more stress on people who are in situations they would do anything to get out of? 


I am sorry that this is such a moany blog and I am grateful that I live in a country that has a benefits system but my word, the system is so screwed up. It preys on the sick and the weak. It makes everything as difficult as possible as if to turn them off from trying. 

It makes me feel sick to my stomach to think about it all, it really does. At the moment we are officially up the creak without a paddle. The little savings we did have are all gone and until the 'rapid reclaim form' comes through so we can reapply for housing and council tax benefits we are getting in debt all the time with our housing association and the council tax. I have a deep faith and I do believe that this is all in God's hands but sometimes I wish he would show us in our present time that it will all work out in the end. Perhaps he could give us just a little view of the future, just a slither. 

I wish I had the capacity to start something amazing to challenge the way that people who need benefits are treated. Something that would make people sit up and listen, to show the world how 'the others' are treated. I just do not have it in me, I'm too exhausted. I feel like I am fighting infection after infection at the moment on top of all of my normal symptoms (many of which are worsening all the time, the ones associated with my bowel anyway) and I am just exhausted. 

We first applied for these benefits back in January and here we are July and we have only every had one payment and that was 3 months ago! I daren't think who else is going through this. People who haven't got the support of family and friends, it must be hellish. 

Amelia-Rose is of course completely unaware of any of this, Tony and I have squeezed the belt so tight neither of us can barely breathe but we (as of yet) have managed to pay for her tap lessons and her swimming lessons and still give her her £3 a week pocket money. For all of those children whose families have no choice but to let on how tight things are the knowledge of something so grown up in such a small mind but be beyond daunting. Children shouldn't have to live through this. For goodness sake it's 2015,how the government STILL not have a FAIR system that WORKS and is effective? How can clerical errors be allowed to cause a family to go through months and months with no income? 

I always think it's funny how if you owe these people money they will hound you day in day out but if they owe you money it's like going 3 rounds with Mike Tyson to get it back... if you can at all!! 

Financial stress, I believe, is one of the worst you can face, there is no hiding from being broke, it surrounds you and eats away at you. I know I shouldn't cry over money but the stress of all of this has reduced me to tears more times then I can count and hundreds of thousands of families go through it every single day. Thousands of families who are guilty of nothing but being unable to work due to poor health or disability.

These things are not going to resolve themselves if we rely purely on our government to do so. We need to come together as a society to care for one another and look out for one another. To keep an eye on our friends and neighbours and step forward to help out if we can. People are capable of greatness whether it's individually or as a collective and we have to search ourselves for that seed that can be planted and become a huge and towering shelter for those in need. 

I hope one day when my health allows it and we are settled ourselves I can do those things that I have just written about. I volunteer at the food bank and was one of the three people that originally came up with concept of helping the community but I want to do more then that, I want to create a something that people can turn to in their hour of need. Even if it is just a support group for people who are dealing with the benefits system in our country I want to help. I don't want anybody to experience what we are living through at the moment. I wouldn't wish this on anyone. Something needs to be done. 







Tuesday 7 July 2015

Surgery update

Oooooookay people, we are on our way. Holy Moly this is actually going to happen. I am going to get a major organ taken out. There is a sentence I didn't think I would say. 



When I had my ostomy surgery last year I always knew that the colon had to go and I knew the longer I had it still in tact the more the symptoms would increase and the more uncomfortable and poorly I would get. I felt so chipper after my surgery though all those symptoms felt a long way off. When I had to ostomy surgery my surgeon tried to empty the enormous amount of, well, you know what but he wasn't able to meaning I am quite literally full of, erm, you know what and it's been in there for over a year now. Gross I know. 

In all honesty when I went to see my surgeon back in January he wanted to book me in for March but I was still deeply in shock about the last surgery without even knowing I was in shock. I thought I was doing great and just wasn't ready to think about more surgery. It wasn't until I spent mothering sunday afternoon on the bathroom floor crying, well, sobbing that I realised for the first time something was really wrong. 

I guess admitting you have a problem is the first and hardest step and I am now waiting for counselling but Tony and I talk things through more then we did before. 

I wish now that I had taken that first date (he actually offered me 3 in that appointment. I know I have bought this on myself but I wasn't even two months post op then and it all felt a bit too much) but I didn't and now it's my turn to live with the fallout. The symptoms are pretty awful to be honest. First there is the fact I am solid food intolerant again, then there's the horrendous spasms that will only ease if I sit on the toilet but by sitting on the toilet it triggers terrible back pain and pins and needles like you wouldn't believe in my legs!

Following on from those three symptoms there's the constant nausea that makes me feel like I have done a loop dee loop a thousand times. I also get headaches like I have never experienced in my life. Laying down in a dark room does nothing to touch these bad boys! 

I suppose the most embarrassing would be the raging fevers that strike at any time. I can be listening to a child read at school (where I go in if I am well enough for an afternoon or two a week) and from nowhere be sweating buckets. I have had to start carrying a hanky with me because if I don't dab my forehead it will literally drip down my nose!! 

 

It's also causing my joint pain to go crackers. I never knew the colon could be responsible for so much. Certainly not an increase in joint pain but indeed it does. (thanks to the NHS website for that nugget of information) I wake many days and feel like I have the flu. It really is pretty rotten. I talk with Tony about everything but I haven't really got anyone else to talk to. I don't want to upset my family, they have already been through so much with me that constantly complaining about my new rack of symptoms isn't going to help anybody else. 

I think generally people simply don't know how ill I am. Obviously apart from my family no one else sees the illness. It's just there, a part of my life that is hidden below foundation, good blusher and a dollop of mascara and of course a great big smile. 

My doctor explained to me that he is going to organise a nurse to come out to the house to show me how to use a disposable catheter as I've lost control of my bladder. (I know right, good times!) Possibly it's because of my colon but in a nutshell my bladder has over stretched which means it holds way too much liquid (which is exactly what happened to my colon and caused it to eventually fail) I use to be able to push down on my stomach to release the floods but now even that doesn't work very often meaning I am getting more and more and more uncomfortable and have to visit the bathroom every 30 minutes or so in a desperate bid to release it but to no avail.

So as you can see the colon has to go! I'm not sad about having to have a bag for the rest of my life but the idea of the operation itself, it's always nevre wracking going for surgery but this one feels bigger then the others. 

There is no way we could afford to have it done privately which would make me feel so much more relaxed about the wrong thing but the surgeon has said if we could afford it then he would be happy to do the surgery in the NHS hospital and then have me transferred to the private hospital for the recovery. I have had nothing but traumatic experiences with my local hospital. They are so stretched for good nursing staff that if you go in as a disabled patient or have complex medical needs on top of the reason you are in hospital they just cannot cope with it. 

The private hospital was just amazing when I had my last surgery, on top of having my own room Tony was allowed to stay with me day or night if I needed him and when I started to get very unwell with the infection the staff were 100% on top of it. They also really took in how much pain I was in without brushing it aside. When I've complained of pain in the past in NHS hospitals I've been told either it's in my mind (totally not true) or that there is nothing they can do and then ignored me and quite literally pulled the curtain around. I've also been passed a bloody tissue from under my bed and been told to put it in the bin myself when I pointed out it wasn't actually my bloody tissue. I've slept in bedding with stains and holes in and been left without water when Tony wasn't around to fill up my jug. I've never had problems with doctors or hospitals but I am terrified of staying in an NHS hospital after this op. The ill treatment of patients is terrible and I don't want to get an infection like last time and not come through it this time because it isn't picked up in time or taken seriously. I am sure this all sounds perfectly ridiculous to most but for me it's all about peace of mind and being in the best possible surroundings so I can make a full recovery as quickly as possible. 

Like I say, the colon has to go. I need to take a deep breath and put it in God's hands. Everything will work out. 
I hope!     


If you would like to donate to our gofundme page created by a friend of our family please click the link and it will take you directly to our page.  http://www.gofundme.com/foroursongbird 


Wednesday 1 July 2015

Go fund me?!



I can't quite believe that this is happening but a good family friend got in touch recently and asked if they could set up a gofund me account for Tony Amelia-Rose and I to help us out so we can improve our quality of life. It isn't something I normally discuss on facebook but this is set up to help with things such as a new wheelchair as mine is broken, although we are making do with it it isn't ideal to be going around in a broken wheelchair, the NHS don't provide wheelchairs for people, you can get vouchers but these don't come anywhere near the cost of good wheelchairs.
 
Also my GP and pain management consultant have decided that although we finally have a medication regime that is getting me out of bed most days it is so high (I am on 600mg of morphine a day and take 3-4 break through pain killers every 4 hours, plus paraecetamol, pregabilin and meloxicam ) they don't take the pain away by any stretch of the imagination but it does take the edge off enough so I have been able to begin to rebuild a life for myself. They want to stop it ALL now though, EDS has been proven to respond well to alternative therapy but the NHS won't fund any alternatives, I am beyond scared at what the future holds when this med reduction happens. It's going to be agony. We can't afford any alternatives therapies as things are very difficult at the moment.
Any money raised would also help provide accommodation for Tony and Amelia-Rose in london, after I have my colon removed my EDS consultant wants me to go for 2 weeks in patient physical rehabilitation to help me 'adjust' to being disabled. I will only be allowed home at the weekends and there is no way we could put Tony and Amelia-Rose up in London, I can't be away from Amelia-Rose for two weeks though, it would be heartbreaking for her as well as me. When Tony had to give up work back in January we were told about the benefits we could apply for, 6 months on and we are only receiving two of them. £60 a week carers allowance and my DLA which we have to use to help pay for my appointments etc This is because of the huge back log the benefits system is going through at the moment.
I also urgently need my colon removed, when I had my bag fitted the surgeon was unable to empty my colon which has stretched twice the size of a normal colon and therefore was carrying twice as much, he warned me at the time that the longer it was left the more side effects I would get, on top of chronic painful bloating I also am getting debilitating stomach pains, headaches, sickness, high fevers that strike any time (it's why you may have noticed I always have a hanky to hand, it's very embarrassing to be talking to someone and suddenly break out in sweats) and have now got a bacterial infection that has bought out very painful boils and spots all over my back and upper body, they've checked ears, throat etc and there is no sign of infection so it's likely in my colon.
I am going to see my surgeon next week to be put on the waiting list for surgery but he is in such high demand his surgery list is huge.If I could have it done privately his wait list is two weeks.
Money would also help provide respite for Tony and Amelia-Rose. Amelia-Rose is around sickness and disability all the time, we try to keep her informed but also protect her from how unwell I am, she needs a break sometimes, time to go off and do fun things, we try to make her life as wonderful as possible but you can't removed EDS from our life unless you remove me! It would be wonderful to send Amelia-Rose off to say go horse riding or something like that. Just to give her some fun time away. I don't feel like I deserve this, it's such a kind wonderful selfless act of this person but anything that would improve Tony and Amelia-Rose's quality of life is great by me and getting my colon out and things like alternative pain management would help me to be the mum I so desperately want to me. I do my best by Amelia-Rose, I try to do as much as i can to be involved in everything that goes on but my pain and chronic fatigue limit what I can do. I know everyone is hard up at the moment and the economy we are in is really hard but if you do perhaps know anyone that could share this please do. Thank you so much to the person who has done this, I won't ever be able to tell you quite how much this means to us.
We are so blessed with the support system that we have from family, our extended church family and friends and I thank God that he has put so many wonderful people in our life. If you could just click the share button I would so appreciate it. Thank you, thank you. Much love. x x x


http://www.gofundme.com/foroursongbird

Sunday 17 May 2015

There are always things to say.

It's been a long time since I last updated my blog or had any real interaction on social media, there's a lot going on at the minute and it feels like the walls are closing in a bit. I guess I need to find my voice again. I've written other posts updating the situation that we find ourselves in but I can't seem to finish them completely which tells me it isn't time for that part of the story yet. I will recall the tale of my surgery and recovery another day but for now be assured I am the proud owner of one stoma named Sophie who saved my life and I am very happy with. Having the illeostomy surgery was the best health decision I have ever made. Even though it wasn't really a decision as such!

There's so much that I want to say, that I feel like I need to say but let us just see what comes out tonight shall we? I've been suffering with depression for a few months now, it's not something I've decided to share with anyone really apart from a close few, it took an enormous amount of courage to admit that I was suffering with depression and the low days were indeed more then low days and something much darker had crept in. I had three days where I completely broke emotionally. I found myself on mothering sunday sat on the bathroom floor (lord knows how I got there) howling but silently howling because I didn't want Amelia-Rose to hear. At one point Tony came in and told me to get up and I said to him 'I don't know how' and I meant it. I literally didn't know how to get up off the floor. I had hit the bottom and I wasn't sure how to get back up again.


 After that terrible day I knew I needed help. Even though I still retain the ability to look like myself on the outside and say all the right things and wear the right smile I knew that on the inside I had numbed to a point beyond recognition. I didn't know if I would ever see myself again.


Since that day I have been working on myself and I am trying to wrap my head back around the practise of mindfulness which has always been a great tool in the past. What I am is completely overwhelmed by the future. I don't have a joint that doesn't hurt anymore, I've lost the use of my colon already and now my bladder has stopped working (in that I can't go not that I leak!!) which makes me nervous about what may be next. Unfortunately I am back to throwing up whatever I eat which kinda sucks as I thought that would be ok again forever. I suppose it was more like a reprieve then a cure. 


volunteer up at the school two afternoons a week and help out at food bank  every wednesday. Thursday I generally spend on the bed because the pain is so horrendous from the day before. I said to Tony this week from now on I am going to call Thursday 'Hurtsday' as I basically lose that day of the week. 


Ok so lets talk pain. The pain is awful. I mean really awful. I have lost the ability to remember what it feels like to not be in pain and I know most likely I will go to the grave not remembering what it is like to be pain free. Generally I am able to manage the pain but it takes very little to tip into the 'not coping' camp. For instance if I have all my 'normal' pain but then get a headache (which I suffer from more and more. They are like migraines) then I will be struck down and stuck in bed.  If I pop something that doesn't normally pop it will put me in bed overwhelmed by pain. Don't get me wrong I don't become this hysterical wailing woman, I refuse to begin to cry because of the pain because I know if I start I don't know how I will stop but I do become bed bound and my 'go to' techniques that I use to help with the pain stop working. 


I am trying new meds but so far they aren't coming close to managing my pain. I wish the NHS would fund alternative therapies so we could at least try a different approach but we can't afford to fund these things. 


Tony was never able to return to work after I got very sick in October last year, he is now my full time carer and at the moment we can't see a time when that will change although I like to think it won't be this way forever. 


Tony becomes frustrated because he feels like people don't grasp just how unwell I am and it leaves him with no one to talk to about it. I guess I am partly responsible for that though because I rarely let people in our wider community see me for how sick I am. When I see them I put on my make up and slap a smile on my face. I guess unless they know they aren't being given the opportunity to offer to help are they? Ha
ving said that though Tony is pretty vocal about how things are. If only people ask. 


I am excited to be writing my blog again and get back on youtube, my channel has had well over 10,000 views now and the feedback I get is fabulous so doing that again will give me a purpose and a lift. I just need to make sure I make it a priority. 


I am so exhausted with chronic fatigue now that I had to stop and take a break but I am going to try to make time during the day so I don't have to do it at night. 


I am still singing, will I ever stop?! Steve and I have the musical sketches for about 5 new songs which is really exciting and we have a gig on the 12th June that I am really looking forward too. Regardless of whether Tony had to carry my butt to a gig and sit me on a stool and tell me to sing I would do it. If I could I would preform once a week at least. I love singing to an audience. The energy you can absorb from an audience is magical. I come alive when I preform. I really do love it. It's my passion. I love hearing people's stories after the gig and to learn how songs I've written have impacted on their life. That really is one of the greatest gifts I can receive. 


I guess that is all for today. I hereby promise I will be better at updating my blog again. Cross my heart. 


Until then though. Many blessings to you and yours 


Love x