To ask for positive stories of living with chronic illness?

[riotlady]

I’m feeling a bit down after talking to my doctor today and worrying about all the things I might not be able to do- a second child, the career I had planned, holidays, sports etc. Most stories on the internet about people living with things like chronic fatigue syndrome or fibromyalgia are there to raise awareness and seem to focus on all the worst bits- I would really love to hear from some people who have chronic conditions and feel like they live a happy, fulfilling life?

I got chronic fatigue and fibro in Feb 2019 and i'm now coming out the other side of it and feel almost normal now. It was a lonely and painful journey but i can see the light now

I started eating an anti-inflammatory plant based diet, juicing green vegetables, yoga, cycling, keeping to a strict bed time, massage to stimulate the lymphatic system and getting rid of anger, bitterness and unforgiveness and last but not least getting lots of sunshine (in the summer), vitamin D,B, fish oil and tumeric

I have a full time job, date and enjoy life. There is hope for people with fibro and chronic fatigue but healing takes time and you have to be on top of your regime. It took me 2 years to get my body to feel almost normal

I’ve got Ehlers Danlos syndrome and secondary to that, fibromyalgia and chronic fatigue syndrome. My life’s lovely. I’m in pain all the time, to some degree or another, and I’m often shattered, but I’m very accepting of it now and I’m good at not focussing too unnecessarily hard on it or letting it define me.
I have a wonderful husband, our own very successful business alongside a part time job which I enjoy, a gorgeous home in the country with horses and my fabulous dog.

I have chronic pain, but nowhere near as bad as others.
Last year I attended a chronic pain CBT group course, turned my mind around into acceptance and also improvement.

Is your diagnosis one of those two examples? I only ask because I'm reading the replies and wondering if reading about people who feel healed and no longer chronically ill is going to give you hope (because you have the same diagnosis) or make you feel worse about receiving a different diagnosis...

I would say that connecting with other people who share the same diagnosis can be powerful and help you feel less alone. That can be as important as any other strategy or symptom management plan.

I'm diagnosed with CFS, had some extreme symptoms including loss of feeling in limbs and huge weight loss. 5yrs on my life is totally different, got a lot from attending an NHS physio and pacing (which I know is a bit controversial on here). I finished university and went on to further study whilst working. I'd never thought it would be possible.

Yes I do now have another serious and long term illness but the physical symptoms are much reduced.

Same here with the pain and i was depressed for the first year, it was shocking and i went on steroids for a bit. I'm in pain now but i've learnt not to focus on it so it is in the background. The pain was a lot worse 2 years ago. For me the fatigue is more unbearable than pain

What helped was when i stopped comparing my health to my family and friends...and i had to train myself to look at the positives in what i did have

@PurpleFrames

I'm diagnosed with CFS, had some extreme symptoms including loss of feeling in limbs and huge weight loss. 5yrs on my life is totally different, got a lot from attending an NHS physio and pacing (which I know is a bit controversial on here). I finished university and went on to further study whilst working. I'd never thought it would be possible.

Yes I do now have another serious and long term illness but the physical symptoms are much reduced.

This is good. I've noticed the body does get better in time once it gets past the initial shock

I have inflammatory arthritis - I've had it since I was 18 and I'm now 37. There have been ups and downs in those time. My medication is relatively helpful but there are some joints that are damaged and will not be 'cured' other than with eg a knee replacement which I wouldn't want yet. To be honest, it came as a bit of a surprise to learn that other people weren't in pain all the time! I've just learnt to live with it; I'm not sure I've really made many concessions to it but it's just part of me in the same way that my hair colour is or how tall I am is.

Personally, I hate "acceptance" with a passion because it does not work for me and is extremely counterproductive for me due to my personal circumstances. I get on better with the concept of "transience" instead. Although I also find therapeutic swearing very helpful too.

So there are different options to explore to find the right fit for you.

I have multiple sclerosis. Since my diagnosis in 2010 I have travelled the world, undertaken a masters level professional qualification, built up my career, owned 2 homes and half done up the current one, had wonderful healthy dc. I've had anxious times with my MS and a particularly bad relapse along the way.

Since my diagnosis medications have come along leaps and bounds and I'm on a wonderful drug now that reduces the disease and the symptoms. For £0 thanks to our glorious NHS.

I thought my life was over when I got the diagnosis but that was shock and fear and simply not true.

Huge moral support to you OP.

Thank you everyone for sharing your stories :)

@user1325352314 I’m not officially diagnosed yet, been through a lot of tests and am being referred to a specialist fatigue clinic, but as things get ruled out, chronic fatigue syndrome is looking more and more likely. My doctor told me today I’m unlikely to get any better in the short to medium term and the best thing I can do (and all the clinic will be able to do for me) is work on managing it. When this all started I thought I just needed some iron tablets or something and would be better in a couple of weeks, it’s been hard to come to terms with the idea that I might not be getting better anytime soon.

@PurpleFrames haha I’m actually training as an occupational therapist so I’m also quite a fan of pacing in the right context, have been doing my best to apply it to myself!

Oh and in terms of the good stuff, since a I've been diagnosed I've got a degree, two post graduate qualifications, a successful career, had a baby (and done a masters while on mat leave), been on all sorts of holidays (albeit not very active ones because I like lying on a beach!). There's probably loads of other things too!

I’ve lived with CFS for 40 years, I don’t work and have to use a mobility scooter to get about. I have to pace strictly to get through the day. BUT I am happy, I love my life and my family. I just accepted years ago that this is how I am and I just get on with life. Life can be happy even with poor health.

I'm currently waiting to hear if I may have arthritis of the spine (Ankylosing Spondylitis), which I guess would be classed as a chronic conditions, so I appreciate this thread of positivity. I don't have anything to add except I hope that you do get a diagnosis soon, even if it isn't quite what you'd hoped, as at least when you know what is wrong you can start working on it and trying to manage it - I keep telling myself this as well, although there have been some lower moments too.

Best wishes! :)

Thank you, good wishes to you too @JalapenoCheeseOnToast

I'm still readjusting after four years. I've got to take some responsibility for my actions as I was a workaholic and I did derive a lot of self esteem from a good job/earning loads/prestigious company. Not so healthy and probably accelerated my condition.

I'm still working but for 2/3 less money. It's provincial, I'm a dogsbody, middle management are at best weak and at worst incompetent bullies who have worked there for 30 years and couldn't work anywhere else, no progression, and it's not a sexy industry. Bit hard to not be bitter about this. Some days I'm all, this isn't my life - where has my proper life gone?

BUT

I'm happy. Lovely child (no2 not possible on my meds), lovely relationship, lovely friends, lovely family, lovely home. I never appreciated these things before as I was chasing the next materialist thing. I've found lockdown a breeze as I'm so used to having my freedom cut despite shielding all year. I've realised the problem is my ego and I'm rediscovering what can make me happy. It's good to look after myself, sleep, rest, care, exercise. On my deathbed I'll not regret spending more time at work but I'll appreciate all the time this illness gave me with loved ones

Well it has got my husband to pick up his guitar, and learn french and get into art. (He can,t work so has to do something.)

Fibro, here.

My symptoms were at their worst when I was diagnosed. I was seriously wondering about a stair lift, as getting up to bed in the evening was getting so hard.

After diagnosis and a course about management, I changed my life style.

I rest, sleep, don't do late nights and long hard days. I've got a better handle on the boom and bust situation.

I need to do better on diet issues.

One of the underlying reasons I got ill was burning the candle at both ends- working too hard, ignoring upsetting emotions, not looking after my own needs.

You don't have to be miserable, just avoid stress and actively look after yourself.

I have ankylosing spondylitis. My spine is fused 1inch at the bottom, just over half an inch at the top, shoulders are fusing together as is my hip joints so I’m constant pain and have been since I was very young. I also suffer from paraplegic migraines which is another chronic condition but turned 30 this year, bought a house, got engaged, have a great job with great people an amazing family and fiancé and to top it off had my first baby this year so the majority or my life is great. Yes there are tough days there are days I can’t get out of bed but not had a day like that for a long time tbh. My dad has AS also so it’s kind of seeing what is coming for me. He walks with 2 walking sticks as he is refusing to go into a wheelchair and loose his independence for now but he says things could be so much worse. Yes it’s really hard living with a chronic condition but life is what you make it.

Hello

I have lived with long term neck pain with no real cause. 1- 2 days a week a lot of pain. I am still working through this. Starting biofeedback next week as I realised a lot of my issues are from emotional trauma.
Have your looked at John Sarno and read his books? They make a lot of sense in my case. Very interesting and the concept of TMS is interesting too.
My doctor although a lovely guy was completely useless.
I use curable app also - magic.

Good luck.
It's awful with flare ups.

From experience of family member I would say do anything that makes life easier for yourself - blue badge, use a wheelchair to get out & get fresh air, use assistance at airport (once travel allowed), set expectations with family of what you can manage. Some hospitals have rehab clinics with physio, OT & CBT working together. My family member was diagnosed with CFS but later found to have autoimmune disease & with treatment now lives normal life.

I have had ME for 22 years. (A lot of people who have a CFS diagnosis will meet ME criteria but not all. Look up ME ICC criteria for full details if interested)

I have been bedridden now with severe ME 24/7 for 8 years. I also had a period of being bedridden for 16 months 15 years ago. This is not to depress you but to say even at this much restricted life I am not unhappy all the time and can still find joy and meaning. The time I was bedridden for 16 months 15 years ago was awful as I couldn’t be online, talk more than a few sentences over the day and was v ill. However, this time I can manage a few things from my bed and so appreciate what I can do.

For my first 8 years of ME I was moderately affected and although I could no longer manage paid work I could live independently and still manage some things, although exercise which I loved was out of the question.

No one knows what the future holds, maybe you will improve a lot, but even if not it is good to remember the start of chronic illness is a period of great adjustment and can involve grieving for that what you can no longer do. However, with time it is possible to adapt and find new ways to live within your new limits.

Finally, keep up with the pacing, it’s no cure, but if you are experiencing the key feature of ME, post exertional symptom exacerbation after a level of activity that would have been trivial before getting ill the illness, your level of functioning could worsen if repeatedly going above your new activity limits. Good luck.