Apathy and autoimmune disease

[Heucherarowan]

Just that really.

I have primary Sjogren's and a couple of other things like Hypermobilty and Raynaud's and am struggling to make progress to reduce the fatigue/pain and live with the many, many symptoms. I am on hydroxychloroquine and have been referred to physio etc. I've made significant lifestyle changes and work part time.

I'm doing everything I can given I have to work and don't qualify for any assistance. I have a young family and no support outside of my husband. Work pays great lip service around understanding and being flexible, but the reality is I'm still expected to deliver.

People don't understand I'm not really getting better and that as much as i'd like to, taking it easy as they suggest isn't an option when there is no financial back up to replace my income if I stop working.

I feel so fed up with the impact of all my symptoms and simultaneously feeling too crap to live a full and normal life, but not being ill enough to qualify for help and not really able to take the time I might need to get on top of it.

Friends rightly prioritise their own problems and I know no one really wants to hear anything other than "I'm fine thanks" when they ask how you are. Or if you are honest, they start offering comparisons to their really benign problems like having a cold.

So my question is, how does everyone else manage their feelings of apathy caused by their conditions? I'm really struggling at the moment to find a way to enjoy life. I feel like I'm going through the motions because even really basic things, like taking the kids to a swimming lesson, cooking a meal or the bits of life that have to happen, just takes so much energy.

I have no one that can help with it all and just really want to get better, but I think it's starting to sink in, this might be it. It's actually making me quite sad.

Yes I'm having a massive mope :) but I know I'm not the only one who's been there so thought I'd seek out the advice from those that face similar challenges.

What did you do to help yourself mentally adjust to your actual lived life vs your expectations?

It sounds very difficult and all the more frustrating when you have made changes and still struggle. I totally get your difficulties in getting people to understand what you are going through, many of these conditions are rare and therefore not something people can really comprehend. You look normal and tiredness doesn’t show, words like exhausted are overused so have lost their power.
You might find more support, on line at least, from support groups specific to your condition, if nothing else they can make you appreciate that there are others worse than you.
It is not easy to alter your mindset and not something you can do overnight, I was much older when I was diagnosed (systemic sclerosis) and was self employed so could cut back at an age when others were doing the same. The hardest part was in accepting that I was unlikely to make further progress in developing my micro business. Finding things I could do within my area of work, so teaching rather than creating myself helped.
It is hard to find a balanced way of life, you have to be clear with others about your diagnosis and its impact on what you can do, effectively admitting that you are chronically ill but at the same time having the positive mindset you need to deal with the challenges that illness brings.
I hope others are able to offer advice more relevant advice. I don’t know if you have had a benefit check from CAB or somewhere else, if not please consider this.

Thanks for the reply @eatreadsleeprepeat. Yes, I think this happening in my mid thirties is a factor in my feeling of glum. There's lots of life left and small people to raise and no prospect of feeling better! Plus not yet being set up enough to know I can face it independently. I'm not a huge fan of being solely dependent on my husband financially and know that's potentially where it ends up. I've joined some forums specific to my condition and they are helpful. Unfortunately definitely don't qualify for any benefit.

I imagine I just need to go through a good deal of self pity to work through it all and hopefully I'll get to a better place.

Thanks again!

That doesn't seem fair that you don't qualify for any benefit, like PIP, when you are clearly struggling such a lot. I think you are allowed to feel angry about that, though I guess you don't want to dwell on it.

I can relate somewhat to what you are saying. I have recently been diagnosed with autism, but I don't qualify for any support and now I also know I won't really "get better" and I also feel completely unable to tell anyone about it as I know I will be disbelieved because I look fine. So I feel quite trapped and sad and also in a burnout phase. I have nebulous health issues too. Appreciate this is not the same as your condition though and I hope it doesn't seem like a comparison to a benign problem.

My psychologist is helping me to accept that my needs are real, because I think my tendency to minimise the struggle makes everything worse because it's all internalised and then it starts to make me ill. I do have to keep going, keep working, keep raising my DD, but I'm not putting myself in as many situations that push me well beyond my capacity, because at least I'm starting to not gaslight myself about how they impact me. The more I trust myself, the less I care about how other people view it. If I give myself the sympathy - and the follow through actions from that sympathy - the less I need it from them.

Same here

@FloorWipes very apt about self denial! I assume it's normal initially to deny the true impact of these things. I think I need to work on this! I definitely don't think anyone else's issues are benign (when I'm not sulking). Problems are all relative. Unless you genuinely are comparing a cold with an autoimmune disease 😂 it's rubbish being in the middle of poor health. But to qualify for help, I'd need to be a lot less mobile, so I guess that's the silver lining and I'm honestly thankful for that. It's very strange isn't it, accepting something so unwanted.

Myasthenia Gravis, hypermobility and Raynauds here - I feel your pain, literally.

I have had the second two forever but the MG is relatively new and I actually find it hard to look back at my life 'before'. I'm only in my 40s but tired all the time and struggle with lots of things. I'm outwardly very not-moany but inwardly I resent what I've had to give up and embarrassed too for some reason, like I don't want to explain it to everyone (the treat that comes with rare diseases!) but feel like I need to explain it so people don't think I'm 90 years old or really unfit or something.

I’m really sorry to hear this. My mum had sjoegrens and rheumatoid arthritis and had to give up work in her late 20s - she also struggled quite a lot with low mood. My dad did a lot but worked full time so she had to do most of the stuff around the house, with my brother and I basically as young carers. She wasn’t trying to work too though - that sounds very hard.

I also have an autoimmune disease that causes fatigue and my life is definitely a lot more limited than it used to be because I have to consider what I have the energy to do every day. I work full time but luckily I’m fully remote - I don’t think I could go back to commuting. We only have one child and DH does a huge amount, but what gets me down is missing activities because I don’t have the energy, and not being able to get nearly as much done round the house as I’d like. Plus I’m more impatient than I’d like with DS when I’m exhausted. I spend most of Saturday morning in bed every week to recover from the working week - is that an option at all? I also try to focus a lot on appreciating smaller pleasures - I love reading and art so I can do those things at home at least.

Yes, I can sympathise wholly with feeling the need to justify the way you just are. Thanks for mentioning resentment too. This is something I think I'm experiencing too, the loss of what was and also the feeling of resenting having to verbalise to people what is happening or they just assume you're fine. I really resonate with the embarrassment/feeling of failure. Have you found a way to help with your feelings at all? It's so much to process and accept.

May I ask if anything has helped your Raynauds and hypermobility? I'm waiting for physio and will be starting meds soon for Raynauds as typing is now becoming tricky and it is becoming more bothersome (constantly numb feet and nose).

Thanks for sharing.

Your poor Mum. That sounds like it was a lot for your whole family too. I think the reality is for a lot of people like your Mum/us is that we all inevitably end up doing more than what we should out of necessity. Especially when there are kids. I imagine there are a huge number of people who just fall through the cracks and are heavily dependent on family. I think I find this quite scary. Accepting that inevitably, this will impact the people I care about.

Yes, I agree that sleep is important and grab what I can when life allows. I'm guilty of not being selective enough over where I spend my energy although I have made good progress, it's something to keep working on. Funnily enough, I have started painting.

Does sleeping in help with your mood? I genuinely feel quite conflicted when I do sleep in and get big fomo as it means it's my husband that is "there" for all the weekend child related activities and I'm not.

My role is hybrid and agree, the commute days are just awful. I'm glad you have a remote role and have a few things going on to help you with yours. I'm taking note 🙂

Hi @Heucherarowan fellow Sjogren's sufferer here.
It has majorly affected my life so I truly sympathise.
Sjogren's caused my immune system to attack my nervous system. It prevented me from walking. I was virtually bed bound for a few months and in a wheelchair. I couldn't sit up on my own.
The fatigue is like nothing else.

I kept saying I can do this. It will not beat me.
You have to be strong. YOU are the only one who can do it.

Some days you have to put yourself first. Eat well & stick to the exercises you are given. Find something just for you that isn't exhausting to do. Knit, crochet, draw, read. Look for something good every day even if it's just that it's not raining. Sounds a cliche but it worked for me.

Some Drs (who haven't done any research) say oh Sjogren's is just dry eyes, dry mouth and sometimes a bit of joint pain. If only!

There is a Sjogren's support group on Facebook. Lovely bunch, all different symptoms, all ages. They share advice, hints, experience. Worth joining.

Don't give up. Be bloody minded. You are allowed to wallow for a bit but then kick yourself & get back into action.
💐

OP it's so hard...have a look at some videos of Values based living, and also Acceptance and Commitment Therapy (Russ Harris). This really helped me to get back some quality of life aside from the daily slog x

Hi, I’m in the same boat. I hadn’t realised my up and down ness, exhaustion, depression and feeling frustrated with myself was anything other than my lack of resilience. Recently been diagnosed with an autoimmune condition though I had others but never joined the dots. Started on meds but feeling worse. It’s difficult to process that my feeling rubbish and unable to ‘do life’ was down to an autoimmune condition.

I definitely resonate with initially assuming a failing on my own part. I'm in the process of receiving a few more diagnosis which feels never ending too. I've noticed it's definitely an up and down process regarding frame of mind. Good and bad days. Hoping that when I get to being a few years in, I'll be more used to "it" and feel a bit less bothered by it all as it becomes normal and I work out more coping strategies. I hope things improve for you!

Thanks, I have done and will keep looking 🙂

Just coming back to say your post did have quite a profound impact on me, so thank you! Bloody minded is a work in progress! But it was the gentle kick up the bum I think I needed!

@Heucherarowan Glad it helped 😊.