Coping with a chronic illness

[jellyreindeer]

I did post earlier in the week about feeling unwell and, after a recent hospital admission, it looks like I'm going to be diagnosed with a debilitating chronic illness. It's had me wiped off my feet for the last couple of weeks and not looking like it's improving anytime soon.

To make things worse, I'm a full time teacher and mum to two under 5. I'm used to being on the go constantly and am currently struggling with the guilt of not being at work (teachers will know) and the likelihood of not being able to return after half term. Also, massive mum guilt for not being able to show my DC the same level of enthusiasm or attention as I could before.

Anyone been in the same position and how did you manage?

I’m not in the same situation as 62, mid stage Parkinson’s, don’t drive and getting more disabled by it, 7 years in.
please do what you can, apply for pip, ( it’s a nightmare to get, try tho, always worst day )and take all the easy options you can.
If spoons of energy’ ration them, when you can
Take care x

Sorry to hear you're going through this. I had to leave teaching after a diagnosis 18 months ago, so can empathise.

It sounds unbelievable now, but eventually your diagnosis will just become part of the furniture so to speak; you adjust to a new normal. I sometimes feel like it's hard to believe I was ever teaching, it feels like I've always been this way. I'm studying part time and about to apply for a remote job so that'll be all change again.

If your condition has a charity attached to it, don't hesitate to reach out and see if they offer counseling - it's not an easy adjustment when your life changes overnight. I had six sessions of specialist counseling funded by a charity (think there was a 6 week wait list) and it made a huge difference.

Yes.
Mum of 3. Had a full time work in a demanding job. Now part time in a less demanding job. I am lucky that I have two degrees. My job isn't great fun but it pays me a wage. It's often very hard to work.
I manage day for day. Not always that well. But what's the choice?

Allow yourself to grieve. Cry. Let it out if you need to. Take each day at a time. I do a gratitude diary when it's particularly getting me down. 3 things I'm grateful for. Sometimes it's just "had a 30 minute nap and felt a bit better" "a nice cup of tea" the small things. It sounded a bit cringe when it was first suggested to me but it helps when I see no future

Thank you both for replying and for the advice. It looks like my body has managed with my illness for most of my life but is now struggling to keep up with itself hence the increase in symptoms. I think I'm just very overwhelmed by the fear and uncertainty.

As it's all so new, I don't know what the future will look like. I love teaching and have worked my way up the ladder so would be devastated to leave but know that I need to put myself first.

I work part-time and receive PIP.

I have to allocate a fair amount of time for physical therapy to keep myself going and also make time to work on my mental health, but it is what it is.

Has a big impact on my ability to socialise as I get really tired very quickly.

The hardest thing I have found is that so many employers are absolutely rubbish when it comes to dealing with disabled employees and allowing for reasonable adjustment.

Depending on what you, my Parkinson’s will progressively get worse, I can’t stop that.
Yours maybe different, you just adjust and manage, I live alone with dearest cat, sadly no use domestically 🐱🤣.
Distraction helps me with pain at times too

Sorry to hear you're navigating this @jellyreindeer. At this point, don't make any knee jerk reactions. My DH has several chronic illnesses and the severity and ability to cope with them ebbs and flows over time - 99% of the time he's absolutely fine to work and then other times symptoms surge and he needs some time off.

For a long time I just tried to fight against it.
Counselling helps.
And time
And connecting with other people with the condition
And finding things to do that you enjoy that are manageable with the condition
Definitely find out if there is a charity that supports the condition. My condition is rare but still had a specialised charity that is supported by expert advice from the neurologists which specialise in the charities

Make peace with equipment and adaptations. I have a stick and an electric wheelchair, although my condition fluctuates and sometimes I don't need either. My quality of life has improved a lot since buying the wheelchair as I am not stuck at home on bad days

Getting family to understand it- my children are amazing and supportive because they understand how much condition works and why rest is important.

Good luck, it's not what any of us would choose for ourselves but there are ways to make the best of the hand we have been dealt

Snap, I do aqua fit, and pay for neuro physio, hopefully it helps, sometimes I feel it doesn’t
Luckily I don’t work, def unfit, and manage

😪

I was able to cut my hours to 24 a week. My children were a bit older but I found less active things I could do with them - hubby stepped up big time which was a massive help. I actually felt relieved when I got a diagnosis - at least you know what you're dealing with. I wouldn't make any decisions immediately- depending on your condition hopefully you will have a treatment plan which will make a difference. Wishing you all the best

Ahh sounds like similar to me, I realise I had had my condition (Myasthenia ) for decades if not my whole life.

I ended up changing role eventually, but only with a lot of reluctance, and I realised fighting my body every day was harming me so much and stopping me having quality time with my family outside of work. I was so reluctant to give up the career progress I had worked so hard for and a job I enjoyed so much, but I actually love my new (mainly home based and less senior ) role heaps, the colleagues are lovely and I am able to spend more time with my family rather than recovering in bed. If I get better then I will consider whether to look at progression again, but equally I think it is about making a good sustainable career that works with a chronic condition.

It took me several years of battling to get to the point I was ready to make the change though. Chatting to other people with my condition who had made similar decisions really helped , as did counselling

This is such good advice too. Often where you are at the point of diagnosis is the lowest as that is the point before treatment kicks in and you learn to manage it.

Thanks again everyone for sharing and sorry to hear that so many have really suffered with their conditions. I'm in my early 30s and wasn't expecting anything like this.

There is a charity attached to the condition who are doing lots of work with the newly diagnosed as it is not very well known and often misdiagnosed for other conditions. I'll definitely be looking into the support they offer but have imposter syndrome at the moment I think.

Luckily, my work have been brilliant about it all so far - I think mainly because my worst symptoms have all been very evident while I'm there. I know they'll give me time and make adjustments but the reality of education is that they can't last. Like others have said though, if I can get my symptoms under control, I could be fine 99% of the time.

If you want to keep going at work (and I totally totally get that, my job is so important to me and tbh the salary gives me options like buying a wheelchair that really help)

Then I would look into (if you haven't already) outsourcing what you can at home. I have an amazing cleaner /home help who doesnt just clean but also tidies and does the laundry etc. This means I can use what health I do have to focus on work and children.

And don't feel an imposter contacting the charity, I would say the time most people lean on a charity like that is during diagnosis (eg when it is suspected) and during flares etc. Hence in a chat group or similar it can seem quite terrible as when the condition is more controlled people tend not to need the groups and charity as much

If you want to keep going at work (and I totally totally get that, my job is so important to me and tbh the salary gives me options like buying a wheelchair that really help)

Then I would look into (if you haven't already) outsourcing what you can at home. I have an amazing cleaner /home help who doesnt just clean but also tidies and does the laundry etc. This means I can use what health I do have to focus on work and children.

And don't feel an imposter contacting the charity, I would say the time most people lean on a charity like that is during diagnosis (eg when it is suspected) and during flares etc. Hence in a chat group or similar it can seem quite terrible as when the condition is more controlled people tend not to need the groups and charity as much

Also look into Access to Work (your HR should also know about it) and there may also be charities that can help with equipment grants etc if things like that could help keep you in your role.

For example, for me, some days the only way I can get to the office by using my electric wheelchair, but the NHS would never have funded one (as I can walk short distances)

My condition starting affecting me badly when I was in my 30s and like you I had a job that I had trained hard for, loved ( though maybe u don't ?!) and I had to adjust career and expectations as things got harder.

My advice is that most chronic conditions don't rob you of your sense of humour or spirit - only you do that. Try and think a bit outside the box - if teaching is going to be too much for you then you have great transferable skills and there is a new career just waiting for you.

I hope though that you manage to stay in teaching for as long as possible by getting the support you need

I was robbed for my sense of humour giving up a job I trained 7 years for, loved and was great at. I will never be ok with it.
But in the end I had to create a life for myself and my family. And that's my focus.

You are so young, makes things worse 😪

As others have said, don't make any knee jerk reactions until you know a bit more of what the future holds for you. I had to leave teaching immediately as it was no longer safe for me to be responsible for a class of children, and I could no longer drive - I know of so many teachers with chronic illnesses who have been able to continue working with adjustments, changes to work patterns and supportive employers.

I know the impostor syndrome is difficult but use every bit of support the charity can give - you are entitled to it! -, especially when it affects you young and is a bolt out of the blue - I was diagnosed at 28 so again, can empathise there