Vasculitis and Exhaustion

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One of the things people really don’t get about having an autoimmune disease is that it is absolutely exhausting.
Normally if you’re feeling tired you have a rest and feel better; with vasculitis I could honestly sleep all day, and when I wake up I feel just as knackered as when I went to sleep.

If I have a day where I rest and don’t do much, the following day I find it difficult doing the same level of activity as the day before.  Some people have likened it to having a mobile phone charger with  a faulty connection; instead of fully charging, my battery will only get to 20 or 30%. Getting up, getting ready, making breakfast takes 10-15%, leaving me with 15% energy for the rest of the day.

Before I was diagnosed with vasculitis I was told I probably had Chronic Fatigue; Chronic Fatigue is one of those things I’d heard of but hadn’t really taken seriously.  My mum calls it “Yuppy Flu”. Seriously though, a condition named for feeling a bit tired?

If anyone tells you they have Chronic Fatigue try not to pooh-pooh it; it can be serious and quite debilitating. There was a point last year and a few years ago where I struggled to even get out of bed.

Vasculitis is a chronic inflammatory disease, which is why it makes you feel so tired and lethargic.

I am seeing a specialist nurse who is helping me to deal with my fatigue; she has told me to look at it in terms of managing my energy levels. Previously if I was having a good (higher energy) day I would try and do everything on that one day. I would then be completely wiped out for 3-7 days after this, and be unable to do anything.

Everyday I make a list of tasks for that day, and decide what I have to do, what I should do, and what I’d like to do. My goal for each day is to do what I have to do, and at least one thing I’d like to do. The “should” do is my lowest priority.

I have to do at least one thing I like, or I would be living a life without joy. In the past I prioritised “should” and “must”; I used all my energy trying to keep on top of things, and left no time for myself.

One of the main reasons I moved to North Wales was my health; in Lancashire I felt very isolated. We lived in a rural area, which was great for walking but when I had low energy it wasn’t really possible to just go for coffee and have a potter.

When I first moved here I couldn’t walk for 5 minutes without having to rest.  Now I can walk for up to an hour.

I plan to start running again this week.
In 2011 I did a 10k in just over an hour. I tried to keep up with my running during my diagnosis but I found it impossible. By managing my fatigue I feel like I have a grip on things, and can start enjoying life again. I will have to take it slowly. I have entered into the Race for Life 5K in June. I will be walking/ jogging, which really grates against my competitiveness, but last year I had to drop out completely, so I am making progress.

If you have vasculitis and are suffering from fatigue, ask your specialist nurse for help in ways to manage. Things I have found helpful are:

1. Time Management – I know, I know, but honestly it helps. If you break your day into chunks of what you absolutely have to do, things don’t look quite as bleak.
2. Ask for help – if you are like me you probably down play your symptoms, because a) you don’t want to whinge and b) most people don’t actually realise what you’re going through. If you have a lot to do and don’t know how you’ll manage, ask for help. The worst someone can do is say no.
3. Resting Periods – I love walking, rambling and hiking, but goodness it can be tiring. When I walk up the Great Orme I have to sit down. A lot. Sometimes it feels like I walk for a minute and rest for 10, but do you know what? I get up that damn hill.  It just takes longer.
4. Naps – Yes, it makes me feel like I’m 90 years old, but sometimes a quick nap can really help boost my energy levels. Just make sure you don’t oversleep.
5. Exercise – What? How does that work? If I’m feeling knackered sometimes the best thing is to go for a 15 minute walk; it clears my mind and boosts my energy.

I hope this has been helpful.  Please share your experiences and tips in the comments below.

Cheerio

Stephani Xxx

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5 thoughts on “Vasculitis and Exhaustion

  1. Very useful post. I suffer from WG and fatigue plays a big role. But unfortunately my GP won’t take me seriously and just says it is something i have to live with. I have found making lists very useful too, and choose 5 key things a day to complete. They could be as simple as hoovering, washing up or even big things like food shop. Some days i manage to do more than those 5 tasks and i feel so proud! Other days i don’t do any at all. So it fluctuates. But the main thing is i keep myself positive and start each new day as if its a new start. I don’t let the condition make me a victim anymore. I used to feel very guilty if i had a lazy day, whereas now i just enjoy it and feel thankful i am in a position to do that. Since changing my mindset it has helped me to cope better. Thanks again for such an insightful post!

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    1. I think a lot of GPs just don’t understand – they do think you’re being lazy. Only you (and other sufferers!) know how it feels. You’re right in that a big part of it is also that it makes you feel lazy, and I find, a bit useless. I had a big celebration the other day because I managed to get ready, go for coffee and walk 18km in one day – 5 years ago I’d have thought nothing of it. Keep positive and keep celebrating your successes xx

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  2. Good article .I don’t know how you manage hiking up hills and running mind,but glad you can.I have 5 autoimmune illnesses,pmr,gca,type1 diabetic ,addisons disease,hughes syndrome .sticky blood.Im constantly knackered but like you a have a walk most days,not far mind.I was medically retired at 51 ,53 now.My Rheumatologist is sending me to a fatigue clinic soon ,he says not heal me as conditions and meds for life ,but give to strategies like your self on managing fatigue.

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