I'm in a wheelchair now - how can I stay positive?
Eight years ago I had a multiple endochrine failure after long-drawn-out complications of childbirth. My endochrine system shut down and I had a dead thyroid gland and a pancreas that shut down. At the time, I was a size 10 and weighed 9 stones (I'm 5 ft 7). I had to start taking a cocktail of pills and inject myself before meals.
Fast-forward eight years and I'm nearly 17 stones and a size 20. Things have got so much worse: I have fibromyalgia, joint hypermobility, arthritis, type 1 diabetes, an underactive thyroid, sleep apnoea, ulcerative colitis, IBS, PCOS and microcytosis. I take 45 pills (including steroids) a day and am lucky if I manage to get out of bed.
My husband and 81-year-old father care for me and they do everything they can to make my life as easy and as enjoyable as they can. When I go out (once or twice a month maybe) they push me around in my wheelchair and take me out for lunch or dinner. My friends have been there for me throughout and I know I'm really lucky in that respect.
I eat less than a child and only have two meals a day (and no snacks). I used to be very active and did lots of sports, as well as running a boys' football team. Now I can't even manage an exercise bike and physiotherapy is so painful that I have to stay in bed the next day.
I could not have changed the passage of my life in any way - it just happened. I accept that and my illnesses genuinely don't get me down - I really try to stay as positive as I can.
However, through the years since I first got ill, I've found it hard to look to the future because my downward spiralling has been so progressive that I don't know when it's going to stop.
Since I had to give up work three years ago. we've struggled to get by without my £40k salary and we won't be able to keep our heads above water for much longer, now that our savings have gone. My husband would love nothing more than to give up work and care for me but we just can't afford it.
If I think about it, it's easy to well up and feel self-pity, so I try damn hard not to. My mum died last year and I know she worried about me constantly and fretted about my future.
How do people with serious progressive illnesses stay so cheerful and how do they make a life for themselves when they don't know what the future holds? Can anyone tell me how to make my life better? I just can't see the wood for the trees.
Thank you for reading
Fast-forward eight years and I'm nearly 17 stones and a size 20. Things have got so much worse: I have fibromyalgia, joint hypermobility, arthritis, type 1 diabetes, an underactive thyroid, sleep apnoea, ulcerative colitis, IBS, PCOS and microcytosis. I take 45 pills (including steroids) a day and am lucky if I manage to get out of bed.
My husband and 81-year-old father care for me and they do everything they can to make my life as easy and as enjoyable as they can. When I go out (once or twice a month maybe) they push me around in my wheelchair and take me out for lunch or dinner. My friends have been there for me throughout and I know I'm really lucky in that respect.
I eat less than a child and only have two meals a day (and no snacks). I used to be very active and did lots of sports, as well as running a boys' football team. Now I can't even manage an exercise bike and physiotherapy is so painful that I have to stay in bed the next day.
I could not have changed the passage of my life in any way - it just happened. I accept that and my illnesses genuinely don't get me down - I really try to stay as positive as I can.
However, through the years since I first got ill, I've found it hard to look to the future because my downward spiralling has been so progressive that I don't know when it's going to stop.
Since I had to give up work three years ago. we've struggled to get by without my £40k salary and we won't be able to keep our heads above water for much longer, now that our savings have gone. My husband would love nothing more than to give up work and care for me but we just can't afford it.
If I think about it, it's easy to well up and feel self-pity, so I try damn hard not to. My mum died last year and I know she worried about me constantly and fretted about my future.
How do people with serious progressive illnesses stay so cheerful and how do they make a life for themselves when they don't know what the future holds? Can anyone tell me how to make my life better? I just can't see the wood for the trees.
Thank you for reading
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Comments
although im sure you dont really want to hear that.
im sorry but i have no advice for you, but i do send my best wishes, in the hope things get better for you.
Thank you
IMO, it's people like you who DESERVE the benefits that the state has to offer. You're the sort of person who the entire system was designed to look after.
It might be better to do this as soon as possible rather than fighting on for as long as possible, causing yourself a load of worry and then ending up destitute before asking the authorities for help.
As for the more general outlook thing, it might be worth taking a look at people like Sir Frank Williams or the american Motorcycle champion Wayne Rainey.
Both ended up in a wheelchair, paralysed, as the result of accidents but both (and many more) seem to have an undiminished hunger for life.
I can't say for sure (not being in your position) but it seems like a person has a choice of either allowing their illness to become their life or viewing it as an obstacle that needs to be understood and then overcome before they can get on with their life.
I guess it's impossible to guess how an individual will react in this situation unless it happens to you but, in my experience, it always seems like the people who do best in this situation are the ones who have, somehow, managed to put it behind them and move on with their lives.
I know it's such a cliche thing to say, but I'm learning to appreciate the little things in life. It is so easy to sink in to depression and feel annoyed at the universe, but it just gets you nowhere and doesn't change anything. Happiness is a state of mind, and all that jazz. It was a completely alien concept to me at first, but thinking positive really does get you through some dark times. Even if it's something silly like a sunny day or someone paying me a compliment, it takes my mind off my troubles for a little while.
This is probably no help at all! But I really felt for you reading your post and hope you feel a little brighter soon ((hugs))
I hope you are prepared for a long post. :eek: My situation is very similar to yours. I was a successful professional with a lot of friends and an active social life. I got glandular fever which I never recovered from, then I was diagnosed with Me/Fibro. I too have an under active thyroid, PCOS and IBS. I lost my job, most of my friends and my self esteem. Fast forward nearly eight years for me too and I am about six stone heavier, a larger clothes size than you and also in a wheelchair. My mum died about fifteen months ago which was the blackest period of my life so I felt I was in a deep deep pit with no escape, no future and suicide was looming large in my thoughts.
What saved me was what I call my moment of conscientization, an almost eureka moment. I had spent the last several years mourning my old life. Everything I thought about related to what I couldn't do anymore, the friends who didn't visit, the negatives in my life. I was also spending my time thinking about what I would do when I got better, things that were basically the same as what I was doing before. I realised that if I was going to survive this illness psychologically and have some kind of life in the present I had to 'move on'. I had to come to terms with the fact that my old life was just that, my old life and that in fact if I looked at things a little differently I could have a happy fulfilled life now even with my limitations. Forget what you can't do and focus on what you can do. For example if you used to enjoy going to rock concerts, well that is out of the question now but you could buy the latest album, write a review and submit it to an ezine. Maybe find a craft hobby and sell stuff on the internet. Blog about your experiences with illness, take up something you have never tried before because you were so busy like painting. I discovered I was quite the artist!
You can be fulfilled now and you still can be happy and successful. I run my own business now called GlamSticks and I have been involved in fashion shows and made them for the odd celeb. I'm still incredibly ill and I struggle with my illness every day. I'm awake now at 4am after having had another terrible night but I've found there is no point dwelling on the negatives.
Another thing I do is make positivity posters and put them around the house. Of course I want to lose weight and it is very difficult for people in our situation. This is the vision board I made to keep me focused on getting better with the things I wanted to do highlighted like learn to ice skate etc. Here's another one. They're actually quite fun to make too!
It's not going to be easy but life isn't going to get better until you can let go of your old life and try living in the present and adapting. It still won't be easy, I have moments when I break down and think I can't carry on but then I think 'what is the alternative'? To be honest, since I started GlamSticks I look forward to each day now instead of dreading it.
I really really empathise, there are a lot of us out here who know what you are going through. Unfortunately the only person who can help is you. Take care and good luck xxx
OP please take this posters advice, your husband could claim the care for looking after you instead of having to leave you each day to go to work.
While you still control your finances regarding the home, do it now before it is out of your control.
I understand how you feel regarding weight, my wife has AS and takes steroids amongst many other pills, like you she eats very little and still puts on weight because of the steroids etc, so enjoy the treats instead of depriving yourself of the nice things.
The Internet can open unlimited doors to keep you busy mentally or financially, you can help others with the same illness as you on forums and blogs.
Before you become ill I bet there are thousands of things you dreamed of "If you had the time" but never done them...now you have the time !. You only think about things you could do, when you cant do them, its natural, enjoy what you can do and do them.
If you and o/h have love then you have everything, ease your o/h work burdens let him look after you, sell your home before someone does it for you and enjoy life.
Google "debt wizard.com" register a free account and speak to Mike Thomas, he runs and owns the site tell him your finance issues and listen to his free expert advice, he will give you free independent advice...PM me if you want more info about him.
Good luck and enjoy the things you can do.
I'm reading this from a slightly different viewpoint - my daughter is five years old and has cerebral palsy. She is already in a wheelchair and totally non plussed by it all but I do worry terribly about her future and how she will cope in adulthood.
I guess her saving grace will be that she doesn't know any different but still, I can't imagine how it must be. Please try to make the best of what you have and if you do find its that little bit too hard see a G.P. (not suggesting you are depressed but nobody would judge you if you needed some help to cope with your situation).
Your mum would have worried about your future as I do for my daughter - its natural, your children are your most precious gifts no matter how old they are. And I'm sure she would hate to think of you being unhappy BUT nobody is going to blame you for having a bit of a cry now and again.
I really hope you find happiness and things look brighter for you soon. Take care xxx
One thing I would recommend is like you have done is join a forum perhaps search for forums specific to your situation. I joined a forum for fertility problems years ago, and have since met some life long friends and we still meet up and catch up, but the good thing is these ladies understand me and understand that sometimes its OK to feel a bit pissed of at the world! I would imagine that although your friends and family are brilliant, none of them like most of us truly know how it feels to be you.
I wish you all the best, and hopefully you will keep us all updated with how things go for you!
Www.thyroid-disease.org.UK
You have to make things happen no one else can help you
Like any disability, you look for any positives and work out the best way to manage both financially and physically.
Never lose hope that there may be a treatment to help you and never give up. Keep looking for support systems and assistance.
Financial hardship is a drag even if you aren't disabled.
The frustration is the hardest thing to deal with, again frustration happens to everyone.
Counselling and maybe antidepressants could help.
I'm receiving incapacity benefit but was refused DLA. I first applied in February 2010 when I was still mobile, walking with a stick. However, I've gone downhill rapidly since then. When my application was refused in October 2010 (yes, it took that long!), I appealed. I was turned down again despite evidence from my GP and now it's gone to a tribunal. I'm waiting to hear about a date.
I'm really sorry to hear that, Summerain. It does help to hear how people in a similar situation deal with things, so thank you for your comments.
Again, I'm sorry to hear that you're suffering too.
Thank you so much for your advice. I will look at your links and take in what you've said because you've come up with some very useful ideas.
Thank you Bambii, your words were very comforting. I do try and stay positive and 95% of the time I think I am - it's the other 5% that I need to work on.
I joined a couple of fibromyalgia forums but most of the posters were so depressed and down that I found it rubbing off on me, so I haven't visited them for a few months.
I really am grateful to you all for your kind words and advice.
www.jst.org.uk
My thoughts too, how unlucky can one person be?
All I can offer you in advice is something I have found to be the only thing that has ever helped me, and an it's old saying that I never really took notice of until I had to, and that is 'Take one day at a time'.
It really does help if you can try not to think further than today (of course you have to line up some future 'treats' for yourself!), but in terms of 'what's going to happen to me' I believe that thinking of today, and today only, helps a huge amount.
I wish you all the best......and carry on with that brilliant positive attitude.
I can't offer much other than to say I hope you know that whatever illness you have that alters your weight or makes things so hard for you whatever, it doesn't change you as a person. Maybe it even enriches you!
Keep pressing the healthcare services for help and advice, join groups with people going through the same thing (there are LOADS of them out there)
I am sure if you keep looking, researching and working for it, you can get back on the upward spiral, but till you do, be thankful for what you have (people that love you etc) and thankyou for reminding me too!!!
I hope you don't all think I am being too fickle about your struggles, I admire anyone who can go through what you do!
Wow thank you! Before I had to give up work, I was a technical author!
The older I got,I looked towards things that I can do well in to raise self esteem and then work on what I found difficult or stressful. I see myself as unique and there is no one in the world like me. I am special.
i saw the sweetest little girl today who had some sort of palsy looking at the way her legs were going and how she had a walking aid. However you soon saw what a bright little girl she was and how excited she was with the world. She was laughing and giggling and pointing at things. She was having fun.
Have as much fun as you can. It is a bright medicine.
Thats a lovely post. Thank you Glowbot
I really am sorry to hear about your plight, stupidwheelie.
I did go to the CAB - they filled in my form for me and told me I'd have no trouble getting DLA.
I don't feel so alone now. Already I feel reassured that others live life as I do, although I wish we could all be talking about how much we won on the lottery instead!
I'm glad, you're most definitely not alone. Apparently coming to terms with your illness/es is like the grieving process, it comes in stages. I don't know if you've heard of http://www.expertpatients.co.uk/ they run courses where they help you come to terms with how your life has changed and what things you can do to make life easier. They're very good - and I'm not easily impressed
I was just shutting myself away waiting for a cure until I went on the course - now I realise this is the way its going to be and I'm finding ways to adapt.
I would say I'm surprised that you were refused even though CAB filled in your form - but considering whats going on in DWP world at the moment :rolleyes: I'm not that surprised. I don't think you need to worry about the result from the tribunal though. When I went I didn't even have to go in to see the panel, they were disgusted I was there in the first place,overturned the decision and sent me home.