Hello. I am male, early 20s and have had a pretty crazy year, mostly due to chronic illness. There was some stuff that had been on the cards for a few years but doctors hadn't told me but the short version is, this year things got pretty bad. I had some bad recurring illnesses late last year and then from March through May, had over 12 seizures and then there was a day in the middle of May where I had 4 seizures in a day alongside vomiting and ended up in A&E on a drip.
I have had a few extended stays in hospital alongside a load of appointments and have found that there is a lot of stuff both physical and mental. On the physical side, I found out I was born with Wolff-Parkinson-White syndrome, which thankfully I had heart surgery and got two electrodes cauterised as they were worried if they didn't act quick with some other symptoms, the chances of Cardiac arrest would have been high. I have been told that is good for now but may come back eventually. I found out I have a collapsed gallbladder alongside several gallstones and echogenic debris and have had recurring gallbladder attacks for months now, that are some of the most pain I have ever felt and can last up to 6 hours and there was an incident a month ago where I met a few friends and then got the bus straight back, but had an attack on the bus and had to get off in a dangerous area at the side of the road and try not to vomit or collapse and reduce the pain and it took over an hour of pain and sipping water before I could even have enough strength to message someone for help. I had anemia but have been sorting that with B12 injections every months, which I needed as apparently my Ileum can't absorb B12, although the doctors haven't mentioned that much recently. I have inflammatory bowl disease, so I often feel under the weather and will have really bad flareups, vomiting etc. from time to time and sometimes like I'm gonna pass out and that is quite draining and as a result, I have the key for using disabled bathrooms as it is genuinely a life saver, both for flareups and if I ever feel like a seizure or attack coming on as I have privacy and space. I have not listed everything and there seems to be some new negative development each month (made worse by doctors telling us some of it like the gallstones were listed in documents when I went in back in 2024 but no-one told me so the collapsed gallbladder was preventable).
I also have pretty bad anxiety, depression, autism, adhd and CPTSD and that can have an effect too on your mindset and I think the physical health issues have definitely worsened things on the mental side, especially as I rarely get to see people anymore and it sucks to see like my friends on holiday while I am in a hospital 3 hours into a Gallbladder attack where the nurses are missing and I can't even get a paracetamol (took 5 hours and I fell asleep after 4) as it makes your situation feel worse.
I have accepted that the hospital stuff is gonna remain for a while, both as so far has been dealing with heart and also there are delays from all of these, for instance medications for one problem may conflict with surgery for another and also just general medical delays, like even though the Gallbladder scan was in May and they they said they were contacting the Gastro team, they kept ignoring it until we pushed a separate doctor in September. I had to miss graduation for my degree bit got an extension and somehow pulled off a miracle and got my degree in the post recently and for the meantime, I am just sort of at home and going to appointments for the foreseeable future and I reckon the gallbladder surgery will probably be January or February hopefully.
The reason I am saying all the specifics of this has meant that I am not active as I want to be and do feel a bit guilty about that. I am constantly in hospital or constantly unwell, drained and pretty depressed from all of this as it has been such a sudden change that has effected my life irrevocably and it is a self fulfilling thing where thinking negatively about it makes it worse and my weight has approached 100kg.
It has gotten to the point that I have been thinking a lot about my life, the person I am and the person I want to be, as it is hard not to reflect after the year I've had, (especially given external factors I won't list) and just genuinely believing there is a chance you might die enough times - there have been at least 3 moments in the past 12 months where not like 'oh this is really bad' but where I genuinely thought I was at the end) as that stuff sticks with you,
There are so many things I want to fix in my life, but I am trying to break them down into manageable separate things to focus on so that I can improve myself, give myself something to do and also build up my strength so that if I have more flareups, gallbladder attacks or if the seizures return after months of nothing and just anything else that is on the horizon, my body will hopefully be better at fighting it as currently it feels like I am held by tape.
I have an exercise bike in the kitchen that I am going to get back into using as in Summer 2025, I was pushing myself hard with that and was so happy when I got to 100km and I was doing minimum 20km a day which for me was good. I am going to try and get back into using that, even if a lot slower. I know I'm not super mobile now and even the ways I could push myself probably aren't on the cards now, but that doesn't mean I can't do something as 30 minutes of slow to moderate cycling a day is better than nothing. I am also thinking of using an ab crunch machine a relative has and maybe getting some weight for myself.
What I want to ask though, is please can you offer up any suggestions, both to me and to anyone in the sub regarding this stuff.
I know I can't go to the gym currently, both due to mobility and also anxiety, but a point that I don't see people I know in similar situations bring up is the distuption angle. I am probably bad at explaining, but what I mean is that being chronically ill and disabled and in hospital does interrupt your life and there have been things like I was doing counselling and had to stop due to all the hospital stuff and I am gonna try and get back into it. If you are anxious, you don't necessarily think about that you can do something now but can't later, you think of that you just can't, so the gym itself is kind of not happening for now. I think about that in my life too, like I have wanted to work out recently but thought that the surgerys and general being unwell that will definitely happen in the next few months would get in the way of the gym, so I want to try and get good habits that I can dip in and out of easier at home as it is less daunting, so if there is a day that I feel better, I can do something without using up all my energy to go to the gym and then feel nervous.
I want to add, eventually when I have lost more weight and maybe feel a bit more confident and have more of a gauge for where my health is at, I will join a gym, but for now, I just need to start small at home and adapting to my lack of mobility for now.
I am gonna try and do the exercise bike, maybe ab crunch and some weights at home as well as dieting, but I want to ask if there any other suggestions? What has worked for you? What hasn't? Any advice?
TLDR: Chronically ill with recurring seizures (that are quiet for now after heart surgery) and Wolff-Parkinson-White syndrome that has been put to bed for now, a collapsed gallbladder with gallstones that caused me by weekly attacks that are the most pain I have ever felt, inflammatory bowel disease, dysfunctional Ileum and several mental illnesses that have only gotten worse due to the past year, resulting in my weight hitting near 100kg at 22. I want to workout and am considering using my old exercise bike, alongside dieting, ab crunches and maybe some weights but also want to pick up good habits where even if I am under the weather, I can do something at home at least, but I wanted to know if the sub had any advice or recommendations on what could be helpful, exercise for if you are Chronically ill and just your own experiences.
BONUS QUESTION: How did you find getting back into the world after your chronic illness hit hard? Mine hit right before I was graduating (nearly collapsed a couple of times in Uni) at a transitional point in my life and it has felt like I am barely here and is hard to get back into regular life after all this, especially while it is continuing sl what has helped for you?
Thank you and apologies for the rant ha. Looking forward to the responses.