Chronic illness, lost a lot, but what can I do to make my life feel happy and fulfilled? How do I change my attitude?

[Optimisticccc]

I have an autoimmune disease which has, in the last 18 months, altered my life. I had to stop my job because I’m immunosuppressed and it wasn’t going to work. Plus I am always exhausted and I was in a lot of pain a lot of the time. Now I am constantly sick because I’m immunosuppressed.

I am on new medication (still immunosuppressed and constantly getting ill) and it’s all getting me down but the new medication seems like it’s good? But it’s early days.

I need a new job, so that’s one thing. No idea what to do and how I’ll do it mentally. But I don’t want to waste my brain.

But my question is: what can I do to give myself a positive mental outlook?

I have ALWAYS been a ruminator; I had a somewhat tricky mother and a very tricky teen life. I carry some trauma from that. I have done endless therapy.

I don’t want to get stuck in negative thought spirals any more!

Also, I get energy from being around people and nature and creativity. I LOVED having young children (now they’re tweens / teens and I miss the baby days).

Help me! What can I do to generally feel more positive about life? Some days I think it’s all over for me. Some days I think it’s my mindset that’s telling me that.

Any suggestions! How do I stop ruminating? And how do I be an optimist instead of someone who leans to melancholy? Any and all tips are so welcome!

Get your vitamin D levels checked. Autoimmune disease severity is highly correlated with vitamin D deficiency. Low D can also cause fatigue and depression. You need blood levels of 200nmol/L. The Nutrient Teams Protocol is a good place to find out more.

I take a vitamin d supplement as it was a little low in January but my June blood tests showed it was all fine now. I’m still taking them though!

I have very low lymphocites and b cells after immunotherapy. And the steroids (that I’m not on anymore) are such a blow to my mental health!

Happy to hear about any supplements that might work. I’ll try them all!

That’s a rough time and also abrupt and sudden change, none of which was of your choosing. It’s quite a lot to deal with mentally, as well as the physical symptoms.

It will take time but acceptance can help you forge a new path forward, knowing that making change can be good. It’s a different path.

If possible, start by trying to guard what energy you do have. Sleep, not overdoing it (especially on a good day), and good nutritious food. Care for yourself and make yourself a priority.

Try to include things which bring you joy - start with the small and simple pleasures. A cup of tea or coffee, soap with a scent that you enjoy. Sitting in a pool of sunshine. Reading a book or watching a program. Try to get outside in nature; it is a balm to the body and mind.

And above all, be gentle with yourself as you navigate this period of your life.

I like to escape into books. If you can't concentrate to read a book, you could always try audiobooks.

I'm sorry you are feeling so pants. I hope things pick up soon.

Try to join in with something. I joined a knitting group when I was out of work for many months unwell. I don't knit (I have a cross-stitch I take), but that's ok. They are a lovely set of ladies and basically a support group.

When I started, nearly 2 years ago, I could barely manage an hour before needing to go and lie down. They meet at a coffee shop just over the road from me. Now I am much better and back at work part-time but still go most weeks, as it's become an important part of my life.

Whatever group you can find, if it's gentle and kind, it will help in ways you may not suspect.

Do you have a sewing machine? Can you knit or crochet? Get making things. I find the focus of making things is one of the best ways to make something. NICU wards always need tiny blankets and hats. Learn a new skill in one of your creative disciplines and join a daytime group. They are usually fairly small and the participants are often retired, so your germ exposure will be minimal.

Daft typo.

I find the focus of making things is one of the best ways to prevent ruminating.

I'd check the actual figures. The NHS "normal" is only 50nmol/L. This isn't "the amount needed for optimal health" but is "the level below which we're willing to go to the expense of treating." You can be deficient and symptomatic and still within what your doctor says is normal.

"Spoon Theory" helps a lot of people with chronic illness. The idea that you start off the day with a limited amount of energy, or spoons and you have to use them wisely.

It's a more visual way of describing pacing yourself. I've pared down this thesis to, "Just do one important thing, properly, per day." Then the other smaller things might flow. Do the bad thing first. Then you feel proud of yourself and the day goes better.

Everybody knows this, of course but sometimes with chronic pain, mobility issues and general things that never seemed so complicated until they became complicated when you are ill, you have to break it down into spoonfulls or bite sized pieces.

Please also remember that most people are OK and you haven't changed really. Anybody of the quality realises this and these are the people to stick with. Occasionally, they might not, "Get it" but it's not through malice.

As for ruminating. Well, we can all think, "I might not be like this if only I'd not eaten that, or smoked, or drunk so many wines in 2008, or met that idiot or signed up for that stupid job" or any number of variables.

But every one of those so called bad choices, taught you something, made you see something differently.

I'm not just talking from an outside perspective either. I'm a wonky donkey these days too. In my forties. Never thought it would happen to me. Neurological alllegedly. Or late stage Lyme Disease. Still at the stage when they pushing me around different doctors and money is getting in short supply.

Be OK. We are the best.

I find mindfulness really helpful -
the Calm app is great and I think offers a 30 day free trial. You need to stick at it but I felt benefits from just a little every day.

Well at first to have a positive outlook think about how amazing modern medicine actually is

Diseases which were once a mystery are now cured or controlled. And we live in a country where you don’t have to sell your house to obtain medicine.

You can only do what you can do, don’t worry about what you can’t.

And work out from there.
Even if all you can manage one day is a new challenging in the kitchen for you healthy dish, or even not that challenging (depending on your skill) but mastering a dish or cuisine you enjoyed eating out/take away can give you a boost.

https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5?utm_campaign=thread&utm_medium=share

I'm not on this thread but it's there.

Not dissimilar situation.

I think it’s really helpful to cosset yourself with a healthy lifestyle, like a baby. Regular routines- stable wake up time, bed time, meals.
Fresh air every day, even if you are sat on a chair wrapped up in a sleeping bag reading a book.

some regular commitments- a community gentle walk group, a knit/knatter, a mental health activities group.

Do puzzles.

Re work- that’s harder.it depends what you can do. There’s online tutoring, if you have the qualifications. Virtual PA. And whatever virtual versions of your old job may work. Consultancy?

💐

Apply for PIP, if you don't already have it.
Get some support from a nutritionist to ensure your diet is the best to help your health - they may also be able to advise on supplements.
Make your bedroom really nice and have blankets and pillows, so you can be comfortable.
If you like crafts, find some that you can do easily whilst you get yourself stable.
See if there are any support groups online for your condition - it's brilliant to get help from people who know what you are going through.
Line up some TV series and films you'd like to watch and a mixture of books for when you have more or less energy.
Audible is brilliant and lots of things to listen to on BBC sounds....
Be really gentle with yourself whilst you adjust to your new life.

I'm having a rubbish day today OP, mainly because of the same circumstances you have described. The only difference is I'm still trying to stagger on in my job.
I don't know what the answer is but I wish you well and you're not alone x

I’m so sorry to hear you’re having a similar day. It’s not easy, is it? Even harder staggering on at work. I hope you find a solution that makes it all easier. Is your job remote? Or are you going in?

This is lovely - thank you.

I love audiobooks - I love book-books too but my brain has been so foggy this week that I’ve been reading a page and then stopping. I think this is a good sign to download something new!

I’m hopeless at knitting / sewing etc but really love the idea of a new creative local class and am going to treat myself to one! Thank you. I love painting and drawing. Have always wanted to try out life drawing so I think I’ll try and find one to try near me.

Oh that sounds rough. I know someone with Lyme disease and it sounds very hard!

I have just disappeared into googling the spoon theory and it sums it up perfectly!!

I actually need to look PIP up as you’re not the first person to mention it to me. I do feel like a bit of a burden on my husband. I’m not earning any money, and he’s having to pick up a lot of the slack when it comes to collecting children from clubs / play dates etc. if I’m in a big flare or have caught yet another bug. He doesn’t make me feel like one by resenting me, but I can’t help it!

It's meant to be office based but I get some flexibility for when I'm unwell.

It's just such an impossible riddle isn't it. Stress and rumination causes/makes these things worse but if you feel like shit of course you're going to be sreased and ruminate!

Have you ever tried mindfulness OP? I did a while back and whilst not convinced it did anything for me physically, my anxiety was much better. I think I might resubscribe myself to the Calm app as someone suggested up thread

It really is an impossible riddle!

I have tried mindfulness before but my mind wanders and I struggle to bring it back - then I start ruminating! I have heard that walking meditation/ mindfulness is good for easily distracted people. I will give it a go!

I’m glad you get flexibility when you’re unwell. I think people don’t realise how hard those times are - I know I never properly did before! I was teacher and it had become impossible. I was absolutely exhausted! Like, floored at the end of the day. It all started 18 months ago and hadn’t even felt that tired when I had babies. Pain is exhausting - sickness is exhausting! I’m glad I left, but also sad I left because I really loved it and miss it. (Also I miss having a salary and feeling like I’m part of the working world!)