Living life with an autoimmune disease

[DancingintheDark17]

Hi,

I'm relatively new to this, as I'm yet to be diagnosed with any autoimmune disease, however a recent flare up, finally has my doctors attention, and instead of blaming all my symptoms on inflammation, he's agreed im hyper-sensitive, where my body is attacking itself instead of repairing. We're still at treating my current skin issue 7+ months, with nothing fully working, but once settles I will be pushing for testing.

I've had a very stressful past year which is likely making this worst, however I am struggling with getting the right balance in life that will help me heal. I have a lot going on at work and home right now, however doing it all isn't helping me at all, so I'm really having to think what is best.
I work as primary teacher full time and love my job, it's challenging but I'm only in class 2 days and 2 hours, rest of time in supporting and leading therapy's etc, so flexibility in work load, the structure is great for my mental health, and seeing progress in kids is so rewarding. But being so physical every day is taking its toll, where my symptoms are more visible to others and I'm often told to take time off.
I've thought about this, but my mum passed last September and I took 3 weeks off, where I found my mental health declined, as I lay about doing nothing, while still over thinking everything. My home flooded over year ago, and although we're living here I still have work men coming and going, so it's not ideal place to relax either.
I also have a 6 year old son, that I'm supporting emotionally through everything, however him seeing me drained and little energy at night is started to get to me.
I feel I need time off work to heal, but fear it will affect me in other ways, however keep going seems to be stopping my body get better.

Basically I'm looking for any one that's been in similar position and how do you manage things.
I get up with my mum in poor health, likely autoimmune disease but never tested, as was one thing after another, and never getting better, she didn't work and ended up in addiction. I hate to go down this root and be a burden on my son, but I have no real solution 🤦🏻‍♀️

I had years of stress, in my job, looking after sick, elderly parents, lots of work on the house due to various problems.
Then my son died in horrific circumstances and my health broke down completely. I was so ill my doctor advised me to retire. Obviously you can't do that, I was already of an age where I could retire from my job and my DH was able to support us.
I had a couple of autoimmune conditions and went through a lot of testing and treatment. 7 years later I am in remission from one and beginning to get the other under control.
Reducing stress has to be the first priority, however you manage to do it. Delaying or delegating anything you can. Getting help/ paying for help with anything you can. Get signed off to take a breathing space to arrange whatever you can. Do you have a friend who could help you go through everything?
The trouble with the NHS is thst you are forced to go very slowly up the drug ladder so you can spend a lot of time on the cheapest, least effective meds before you are allowed the better ones. After 3 years I asked my GP to refer me for a second opinion and although I had to wait a year for the appointment, and Covid came along, the new consultant got things turned around. You need someone to advocate for you. In my case, my DH was that person. You need someone who is on your side, to take notes at consultations, to read up on your condition, help you to identify ways to manage.
I also treated myself to an aromatherapy massage once a week to help me relax.
Ask your consultant if you would qualify for any modifications to your job. Could you reduce your hours?
Tiredness and stress are the worst things for autoimmune disease.
Sorry, that is a long waffle, but maybe you can find something helpful in there. Just wanted to offer understanding and empathy.

I'm so sorry to hear you went through all that.. I qualify for around 6 months full pay sick leave, which my HT has encouraged me several times to take if needed, however after 3 months at home when my mum passed, my heads was birling, so although had loads of time and on top of things, kinda, I wasn't in a good place mentally, that's where my work is good for me. I usually just power through, however I took 2 days off last week cause really bad flare up and I couldn't put clothes over my skin, and now my face is bad, although looks worst than is, I'm worried it's just not healing cause I'm so busy and things.. although I'm 5 days in work, they're not full, as I have loads of time and flexibility in between things, however being out the house al week, I need to juggle catch up with stuff while I have my son, so quality time with him is lacking.. I have thought about reducing days, so I have some time to myself during the week, but as single parent, I need to look into finances more.. unfortunately my mum was my go to person, and although I do have other friends and family around offering, it's hard to break through that barrier to reach out. I just feel so silly at times as, I see myself physically able to do things so I feel i should, however starting to realise negative impact it's having aswell.. I am finding similar difficulties with GP as he fobbed my mum off with medication to combat each issue individually which ended up causing more problems, and feel I'm getting similar treatment, so will defo be persuing further x

I am so sorry you lost your mum. I missed that in your OP.
Tbh, bereavement counselling didn't work for me. I think the counsellor wasn't the right person. I did, however, make friends with a couple of bereaved mums locally and we supported each other. Someone to talk to who is in the same boat can be very helpful.
I found the bereavement board on here invaluable. I would go so far as to say it saved my mental health.

I have every sympathy.

Been a diabetic my whole life, but it is an autoimmune disease, which many GP's seem to blame, when there is anything else wrong with me.

I broke my back in 4 places a year ago and I've been in quite a lot of pain ever since and find the hospital Doctors dismissive, discharged me telling me that to take paracetamol !!

I find it there is a very little that you can do, you just have to accept and do whatever you need to do to make the best of it. just be very calm but firm and plough away fighting your GP or politely demanding a referral to anyone that you want to see.

and you just have to do whatever you need to do to make it work and that's the best advice that I can give you, although that sounds very weak. I truly believe that is the best thing to do.

You just need to do whatever it is, rest more, or do less, to make the best of it, to ensure you enjoy the bits you do actually like.

I sleep a lot. Do little other than mn. Enjoy being with my Dh, party as much as I can with my 'girl' friends, and have cups of tea, curry and wine. Life is good.

Very hard and I feel for you. I was older when I was diagnosed so was able to modify things more easily. Stress definitely worsens things so finding ways to control that is vital, and is different for everyone. You enjoy your job and find it rewarding so keeping it is important and you need to find ways to not have it overwhelm you. Prioritise rest to help you recover from busy periods even if that is finding a way to rest at lunchtime each day or using any time your child is away to rest rather than take the chance to catch up on housework. I have found with a chronic condition that all the usual healthy living habits are more important than ever, eating well, exercise, skin care etc.
Would a short time signed off be beneficial if you had a plan in place to occupy your mind? You could take a week to make yourself your project, research your condition and treatments, practice relaxation or meditation, discover, or rediscover, hobbies. I am a big believer in the benefits of creating.
Keeping a record of symptoms and flares can help when you go to appointments.
Hope you get over this flare up soon and can start to feel more in control.

I thought I had a good diet, but since I’ve cut out dairy and gluten, have found my skin is clearing, even when stressed. I think it was the dairy. But as I have autoimmune thyroid problem, reynauds and endometriosis, have stuck with cutting the gluten out too which has helped me increase protein and veg. In an odd way clearing my skin has decreased stress a little as it’s so tough dealing with it on top of everything else when it flares up, sort of the last straw. I think bereavements and stress trigger a lot in us, but we are expected to just carry on as normal, only people who’ve been through it really understand.

Is it a skin condition OP? I would also say it's important to look at stress, but agree with you that perhaps taking time off will result in bad mental health as well. So perhaps look at your daily routine and how you can relax more day to day. I have psoriasis and it is much worse at the mo and I am struggling. It is not uncomfortable but I am very self conscious about it. Also I get really tired and I have to go to bed at the same time every day and take steps to relax in the evening. It is not an exciting life but my husband accepts me and I am doing ok.

I’m sorry that you’re going through such a difficult time and hope that you are able to find a good balance for you.
I have an autoimmune disease and when discussing my debilitating lethargy with my consultant she described it has having a battery that slowly runs out so it needs to be put on charge throughout the day. I’m lucky that I have an understanding employer that helped me plan my reasonable adjustments at work. Short regular breaks help me to recharge my batteries, perhaps a short stroll outside, I use a meditation app during these times. If you can, prepare a small space in your home that’s just your special relaxing area that you can use to take time out just for you.
Waiting for a diagnosis can be the hardest most difficult time but once you do get this and are finally prescribed the correct medications that work for you things will definitely improve.
Look after yourself, take time for you and hopefully everything will settle down.

@endofthelinefinally I am so very sorry to read about your son

@DancingintheDark17 I have serious autoimmune conditions and like you, I always powered through. I thrive in typically stressful situations etc
But eventually, my body went 'enough is enough'.

So these are my top tips for managing life with autoimmune conditions and reducing stress. They do help:

• support your body nutritionally, eat at nutritionally as you can, avoid UPF, eat a balanced diet and keep to regular meal times so that your body is being fuelled throughout the never. Support your gut health.

• focus on improving sleep. Sleep hygiene rules, for creating restful and consistent sleep. Reduce blue light in evenings and expose yourself to daylight morning & afternoon (look up circadian lighting)

• meditation: however you do it, through traditional meditation, or breathwork (some great breathing exercises out there) or mindfulness. Make it a daily habit, even just 5-10 minutes a day

• doing less. Because you need to prioritise rest, by which I mean not just rest at the end of the day but accepting that your body needs more rest than you've allowed for. So do less than you can do and rest for longer than you need to. Take your foot off the pedal just a bit & just be.

• fresh air: goes hand in hand with daylight here but getting outside into nature helps massively, gives some gentle exercise, encourages good deep breathing, exposes you to more good bacteria, etc. Studies have shown just 10 minutes of bird song dramatically reduces the body's stress levels

You have to carve out time from all the busyness and jobs which need doing to do nothing. Its hard at first, but you need to remind yourself you're not being lazy, you're being actively inactive: giving your body & mind time and space to do nothing.

Just potter.
Spend 30 minutes in the garden with a cup of tea.
Take 5 minutes to enjoy the view on a walk Have a 40 minute nap...

...Leave double the amount of time needed to any job and take your time doing it instead of rushing to to tick it off the list. Use the extra time as 'recovery time' instead.

Building time & space into your life doesn't need to be a case of spending 5 hours doing nothing if you really can't do it that way, you can break it down into shorter breaks where you step off the treadmill. 10 minutes here, 20 there, an hour here....

These things have made a huge difference to managing my health and I notice the impact when I slip back into old habits.

If you take only 2 things from this post, take nutrition & meditation: Studies have shown them both to be excellent at reducing the effects of stress on our bodies & health.

So sorry for delayed reply, just been so busy it all caught up with me 🤦🏻‍♀️ thank you for your experiences and advice, I'm going to slowly start implementing them into our life, and see if they gradually start to help ease everything. Staying positive for now d

Some really excellent advice here 👏

Any other mums out there who have a disability? My daughter is nearly 2 and struggled on for a while now. Have spoken with H/V and social work and have lost the plot as nobody has got back to me with any help. Don’t know what to ask for as I don’t know what’s available! Does anyone know of any charities that help support a parent with a disability who has a small child?