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?

This is all really heartening to read, it’s really good to hear from people who are still happy.

My partner has suggested a wheelchair so we can do more day trips out and things but I’m not quite ready yet, I think it would feel like I’m pretending to be disabled, especially as I don’t have a diagnosis yet. The good thing about lockdown is that everyone else is at home all the time too, so I don’t feel like I’m missing out in that respect!

I have had an autoimmune disease for 30 years. After feeling very cross and let down by my body initially, I just started to live around my symptoms. Since them I have worked part time, raised 3 kids including one who is disabled and pursued my hobbies. I am not depressed and enjoy my life as it is even with hospital appointments, medical tests and the 9 tablets a day that keep me going. Walking my dog, taking care of my family (and them looking after me) and keeping working have all been very helpful to me. It is not what I expected my life to be like before I got sick, but I have no complaints and try to just focus on achievable goals. Hope these positive stories help give you some hope op.

I have hyper mobility(probably Ehlers Danlos as have other symptoms eg cardiac) and chronic arthritis in my spine. Started in my lumbar area in my 20s and has now spread to my neck. This newest development is by far the most debilitating. I am in pain every single day and take a cocktail of drugs to enable me to function. I am fatigued all the time.

I absolutely refuse to be beaten, I’m stubborn as a mule and have worked full time, studied and ran a house with anything up to seven children in it, sometimes singlehandedly when I was married to my ex(he was useless). I’ve had horses on and off over the years and have dogs that I just about manage to exercise. I refuse to let it ruin my life. I seize each day and wring the life out of it! The only thing I have lost is my social life. I just don’t have anything left to give. I have a wonderful(also disabled) DH, but no friends.

Things I have learnt;
Knowing when to stop and rest
Taking fish oils and zinc
Staying active, I feel better when I’m fitter
Stay hydrated(this is new to me, I’m chronically dehydrated and I’ve now twigged that it flares up my neck and head pain)

I have EDS & joint hypermobility and am in pain every day. Both hips are shot and will need replacing soon.

I have a blue badge which helps enormously and I try to keep my weight down and eat as well as I can. I try not to overdo things.

I get a little sad when things which are easy for others takes so much effort and pain is tiring and people who are not in chronic pain really can't understand even if they are sympathetic.

I am happy though :-)

I have an autoimmune disorder and lost my thyroid and parathyroid glands to cancer 20 years ago so I take meds and have trouble with my nervous system sometimes. In the last few years I developed the first of what have turned out to be several adult onset allergies. I don’t remotely have my health, but I am still happy.

There are moments where I get frustrated or get tired of being in pain, but they are just moments. Yes, my life is limited in some ways. It’s very hard to travel. I have to ask a million questions when I dine out so that I don’t get sick. If I didn’t wfh, I would need formal disability accommodations because things like perfume or fragrances shampoo or just basic cleaning fluid can put me in the hospital. I have to carry soap with me everywhere because I can’t use the soap provided in public facilities. Yet, I am happy. I have a job I love. I have a million hobbies. I have a husband who has stood by me through all my health problems. I have an amazing daughter. Yes, my life is less carefree than many people, but it doesn’t mean it’s any less rich.

My chronic illness is Crohn’s disease. I’m 31. If you look at my medical history - 40+ surgeries, a permanent ileostomy bag, nerve damage in my right leg, 2 injections once a week, other tablets too, fatigue, sickness, infections all the time.

However, this doesn’t reflect my life. I’m married to a wonderful man, I’m a teacher and am looking at moving into middle leadership in the next couple of years, we are currently going through the adoption process, I have brilliant friends, when the world isn’t upside down I love snowboarding holidays. I have a brilliant life. I know my life looks different to other people’s but I’ve been chronically ill my entire life - I’m not letting it destroy me!

@riotlady

This is all really heartening to read, it’s really good to hear from people who are still happy.

My partner has suggested a wheelchair so we can do more day trips out and things but I’m not quite ready yet, I think it would feel like I’m pretending to be disabled, especially as I don’t have a diagnosis yet. The good thing about lockdown is that everyone else is at home all the time too, so I don’t feel like I’m missing out in that respect!

Before I was bedridden I used a wheelchair. I am now too ill to use one as I can’t sit up in a chair. I was 27 the first time I used one. Please don’t hesitate to use one as they widen your parameters and let you do things that you can’t without one. Also don’t worry if you haven’t got an official diagnosis yet - use whatever you can to improve your quality of life. Also remember there are various reasons why people have to use a wheelchair and it’s not just for people who cannot walk at all.

Before I was bedridden I used a wheelchair. I am now too ill to use one as I can’t sit up in a chair. I was 27 the first time I used one. Please don’t hesitate to use one as they widen your parameters and let you do things that you can’t without one. Also don’t worry if you haven’t got an official diagnosis yet - use whatever you can to improve your quality of life. Also remember there are various reasons why people have to use a wheelchair and it’s not just for people who cannot walk at all.

Thank you, I will definitely look into it. Mad that at the start of this year I was thinking of signing up for a 10k and now I’m thinking about wheelchairs!

I developed Fibro in 2015 following an injury. Discovered I also had hyper mobility syndrome which had been previously missed. The first 2 years were tough. Constant pain that seemed to change day to day, couldn't sleep. Stuck in a stressful unhappy job that I was struggling to do as normal as very little workplace support.

Despite this, in those 2 years still managed to get married, have a dream honeymoon, conceive a child. Life didn't stop, but bits had to change. Little things like no late nights followed by early starts or days out. Making sure there was rest time planned into busy days when on holiday. Improving posture, and finding the right balance of medications. And looking after myself with osteopathic treatment - weekly when having a flare, otherwise monthly to maintain.

The biggest different was made when I quit my job. Getting out of the stress did wonders for my overall health, and actually being pregnant seemed to weirdly press reset on a few things too.

5 years on and my condition is well managed. I stayed in the same career (actually took a promotion) but now in a workplace I love. My condition doesn't impact on how I interact with my DD(3). I can comfortably walk 2 miles (one benefit of lockdown!). I haven't had a full on flare up for almost 2 years. Yes I still have some degree of pain most days, but not to the extent it stops me doing what I want 90% of the time.

@riotlady, I understand. It’s a huge change going from enjoying an active lifestyle to having to use a wheelchair and with this illness you can’t do physical activity within your wheelchair due to the energy dysfunction.

But I wish you all the best in getting used to trying a wheelchair, it will help you so much in being able to do a bit more.

I have RA, the best bit of that is that it waxes and wanes so in a very painful/brainfog part I know it will get a bit better again soon.
When my legs are dodgy but there is no brainfog I'm exactly the same me as before, sitting down - it honestly changed "me" much less than having a baby did.
My DS is now 6 and for him mobility aids and my restrictions are totally normal, he is also very inspiring as he doesn't really see why I shouldn't do things like take him trampolining/to a distant hotel on my own/out on his bike (using my scooter) etc so that makes me feel I probably can (even if my actual participation has to be adapted).

When I started using visible mobility aids frequently I also suddenly found that I was promoted to the front row of every workplace publicity photograph going...

riotlady: wrt wheelchairs, a mobility scooter might be a good option for day trips - they are powered and people don't gasp and tut so much when you get out of it to use the loo. You can also get them fairly cheaply "as new" secondhand as a lot are bought new for elderly people after falls but never really used at all, then sold on. I have one that I can dismantle and load into/out of the car boot by myself with my DS strapped into his carseat - doing that takes a lot of my energy for the day but once seated I'm basically done with effort so it is a good payoff and gives me my independence to still go out in the car to places when DH is at work etc.

I had ME really badly. Im now fully recovered, work, run (several marathons), socialize etc.

During my recovery, I really focussed on what I could do, not what I couldn't, how happy I was, not how well/ able and really focussed on using energy for pleasurable things not chores or hanging out with people who had a negative effect on me.

So, firstly please don't accept that you won't recover. Many many people do. They just don't hang out on the internet talking about CFS because it's their past, unlike those who are living it currently.

Secondly try to find joy in the day and situation you are in now. Be extra kind to yourself and look after you. It's possible to be both happy and unwell, but don't lose sight of slow recovery too.

Sending it's a horrible illness.

I have CFS. I had the worst relapse ever last year and spent most of it off work.

I think it makes me more accepting of others. To people who dont know me I look and sound healthy, it showed me that almost everyone will have something they struggle with that you don't know about.

I have discovered that spending time in nature is really calming and healing for me (I'm not at all 'woo' but I often recover best after a blip if I have a change of scene and spend lots of time outside).

I have actually found this whole pandemic fairly easy to deal with (accepting that I have been more fortunate than a lot of people in that I haven't lost anyone and can wfh) as I've actually got good at trying not to panic and think the worst, count my blessings and take each day at a time. I'm not naturally like that so that's quite a big thing for me.

It's made me better at asking for and accepting help.

Also the pacing work has made me think about what zaps my energy but also what I enjoy and don't enjoy, I feel like I've discovered a lot about my own personality that I never knew before.

Its helped me become more organised because I can't do things all at once any more so I'll do tasks like cooking in stages sometimes, weigh out one night, prep another night , finish off another.

It's also made me stop running about like a mad thing trying to do stuff that doesnt matter. Like a lot of people with CFS I was a bit of a perfectionist, I'd have a party and have a million choices of food and drinks and not let anyone help. Now I'm like 'come round for beer and burgers' and spend more time actually talking to people. Although the need to do everything myself all the time keeps popping up but at least I recognise it's not good for me now.

Of course I'd rather be healthy and it's hard not to worry what would happen long time eg financially if I couldn't work but for now I'm ok. There are some shitty dark times and I sometimes hate myself for feeling like im letting my children down but it's not all bad it just means you have to live a bit differently to before

I've had RA since I was 24 and am now 47. It is well-controlled by drugs, I work full-time, am a single-parent, have a full social life (pre-covid) and exercise. The key for me was actually taking the drugs regularly and as prescribed (instead of being in denial and skipping doses). Also learning to properly listen to my body, anticipating flares and minimising activity to try to make them less severe. A good diet also helps. I haven't had a day off sick with RA for 10 years and although my hand joints have suffered some damage, people looking in from the outside would never guess that I have a chronic condition, I don't think.

It's well worth taking a stress audit. There are people, places, and activities that really wipe me out. If any of them are avoidable, then you must avoid them!

Evening meetings/working in the evenings- dreadful. I've minimised that now, given up some evening activities I used to enjoy but aren't worth the stress.
I can't give up my mother and sister- they bring me no joy and a lot of stress, but they are family!

@BestZebbie thanks, that’s a good idea- can you use it inside at all or is it mostly an outside thing?

Amazing to hear people have recovered well, gives me hope for the future!

Sorry to hijack a bit but those of you with EDS, how easy was it to get a blue badge. I’ve not bothered as I thought it would be too much of a hassle trying to prove things (and when you’re tired it can all seem too much!)

@riotlady, I used a mobility scooter too for a few months just before I deteriorated to a severe level. I have friends with ME who use them. My only warning is be aware and take into account they use up mental energy driving them, processing your surroundings etc and more than once I exceeded my energy limits and got bad post exertional malaise from spending too long on the scooter. I am not saying don’t use them if your level of ME allows but just remember the activity needs pacing too.

I live with bipolar disorder.
I've accepted that I can't deal with stress and I can't therefore take in too much. I've accepted that after several tries I can't work full time in my chosen profession. I now part four days a week in my parents business.
I've accepted that it is part of my life though it doesn't help me living it.
I accepted I can't drink alcohol and I need full nights sleep.
The acceptance doesn't mean I'll ever come to terms with what what I have. I tolerate it and appreciate that I am okay I just have to do these things to be well

PurpleFrames, I don't think there's anything controversial about pacing as a management technique.

It's the dodgy claims that M.E./C.F.S is psychosomatic and that pacing is a treatment for naughty "faulty beliefs" that's controversial.

(Amongst other things, the faulty belief by HCPs that people dumped in the M.E./C.F.S. bin have faulty beliefs, actively prevents people getting the diagnosis for treatable conditions like the autoimune condition KatieB55 describes above.)

And yes, seconding what PP say. Embrace pacing and all the things you need to do that: mobility scooters, wheelchairs, perching stools, shopping deliveries.

I've said before that my life got instantly better the moment I stopped thinking of myself as a fit person who kept not being able to do things, and started thinking of myself as a disabled person who could do quite a lot.

It freed me to think about the things that were actually important to me to achieve, and how I was going to do them; rather than getting bogged down trying to carry on doing things by the methods that had worked before I was ill.

[quote Guylan]@riotlady, I used a mobility scooter too for a few months just before I deteriorated to a severe level. I have friends with ME who use them. My only warning is be aware and take into account they use up mental energy driving them, processing your surroundings etc and more than once I exceeded my energy limits and got bad post exertional malaise from spending too long on the scooter. I am not saying don’t use them if your level of ME allows but just remember the activity needs pacing too.[/quote]
Oh god, so true!

@PerkingFaintly is correct. The biopsychosocial model of is acknowledged now as incorrect and the US Institute of Medicine in 2015 wrote a report on ME and concluded: “ it is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.”

The biopsychosocial model of ME, as opposed to the biomedical model of ME, with the emphasis on the psychosocial, was created by a group of influential psychiatrists who got involved in ME in the late 80’s and dominated the field for decades. Their model claimed that the person with ME may have got a virus initially (the bio bit) but the virus had gone. The model claimed the person had became deconditioned after resting whilst ill but had developed false illness beliefs that they were physically ill and so remained inactive perpetuating the deconditioning. A form of CBT was recommended to correct a patient’s alleged false illness beliefs that they couldn’t increase their activity and graded exercise programmes were recommended alongside.

Patients repeatedly testified that graded exercise made them worse and they found their was an individual limit of activity they couldn’t exceed before all their symptoms became worse. Many patients had become v debilitated rapidly after getting illl and so the idea that deconditioning could happen so quickly was also not credible. Nonetheless patients were not listened to.

Eventually after the psychs completed a bunch of small studies on CBT and GET the psychs undertook a large scale trial, known as the PACE trial. Results were published in 2011. This trial compared GET, CBT and an unusual, rigid form of pacing not followed by patients as treatments. The psychs claimed the trial showed GET and CBT improved a patient’s functioning over their adapted pacing. However, in time other researchers and patients with ME and scientific backgrounds digged into the data and results and showed the study was full of methodological flaws and used only subjective questionnaires to assess improvements. The trial outcomes also created the bizarre situation where somebody could score a low enough score on the disability scales to qualify to enter the trial as a participant and have the same score classed as high enough to qualify as recovered. The trial was a mess and did not show CBT and GET helped patients with ME to make substantial improvements. The awful thing is graded exercise due to the energy dysfunction that occurs in ME and evidenced more and more in biomedical research means graded exercise can cause ME patients to get worse long term, even permanently.

Pacing is used by people with ME to manage the reduced activity levels/energy dysfunction in ME. This is separate to the PACE trial and maybe why there was some confusion in describing pacing as controversial which as said is not. For the most severely affected the energy required to brush one’s hair can make them feel more sick and ill whilst those less severely affected may find a short walk is their limit. Pacing is used to try and keep within their individual activity limits and not feel even worse. It’s not a cure and a limited means of management until biomedical research can develop effective biomedical treatments.

Another confusion is people can become fatigued plus others symptoms after viruses and can take a couple of years to recover. Until there are effective diagnostic tests it is not easy to differentiate between this subgroup who do make a full recovery and the neuro immune disease ME. Also young people seem to have a better chance of recovery, if managed well at the start and not pushed repeatedly to do activity beyond their limits.