When napping isn’t a choice…

This week is ME Awareness week. It’s an illness that I’ve lived with on and off for over a decade. In recent months I’ve had a bit of a flare up of the illness that has been a struggle (which I talked about in my last post). But I wanted to write a bit more about my journey with this illness. Some of this is taken from previous posts I’ve written in the past.

ME is the better known initials for Myalgic Encephalomyelitisand is more commonly known as Post-Viral or Chronic Fatigue Syndrome (CFS).

I’ll be honest, I had my doubts that this disease even existed, until suddenly, at age 19 I realised I couldn’t push through it anymore. Why was I so tired? Why did I permanently feel like I was coming down with cold/flu? Why did I wake up unable to bend my joints because of the pain? Why the sudden weakness in my muscles?

All that happened was that in April 2003, I got a cold. It lasted for a little bit longer than usual. But no big deal. It’s just a cold. It wasn’t like the previous year when I was sick with glandular fever.

But as I’m tried to study I was falling asleep on my books. I was getting enough sleep but  still tired. And the morning I woke up not able to move I just burst into tears. I was freakin’ terrified.

I carried on anyway (because that’s what I’d always done in life) and eventually I fainted from exhaustion after one of my exams. So I went to the doctor. Mainly because now my friends were moving from ‘slightly concerned’ to ‘a wee bit terrified’. There was no way I could hide my symptoms to the people who saw me day to day.

You have post-viral fatigue syndrome said the doctor. She said there’s was nothing she could do, I just needed to rest and wait it out for now.

Lucky it was summer, and I had no other plans until university started back up in September.

And so I had to learn to rest. I had to learn to let people help me. I had to cope with needles as they took blood test after blood test.

Because I wasn’t getting better.

And then I had to realise that the church looks at people who have post-viral fatigue syndrome as unreliable and not a good role model. It was true – my body was unreliable. It was failing me. At times my mind was failing me. But what really hurt was people questioning my character.

So I made myself much worse trying to prove that I wasn’t unreliable. Finding it very difficult to cope with feeling better, thinking I was finally recovering, having several good days, maybe even a couple of weeks… only to walk into a lecture sit down and realise I was so exhausted and aching that there was no point of me being there because I couldn’t take anything in. I would be in pain. I would be in tears with the sudden tiredness that hadn’t been there 30 minutes before.

A strange blessing was that I’d put on 1/2 a stone during my second year at uni. Thank God. Because while I was ‘recovering’ and been told by the doctors suggested had a million and one other things (depression, stress, asthma, PMS, arthritis…) and I went back to uni to start a new degree I lost more than a stone. Credit to my high school friends, they didn’t say a word about how scarily thin I looked when I came home that next summer until much, much later when I started to put it back on. I also went to try and give blood for the first time. Thank God I did. They weighed me, and I discovered just how much weight I’d lost – I only weighed about 7st 6lb (104 lb) which was NOT good.

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A very underweight koala starting to get a bit better (temporarily at least!)

I also ended up in A&E when I fainted in my car – I’d thankfully pulled over because I was feeling weird and shaky. The doctors thought I was pregnant but nope, my body had ‘a virus’ in it. I had no fever, no sniffles… I just slept for a week.

I don’t think I would have got a university degree had it not been for the set up of the Health Sciences programme. It worked really well for me. Every day we had classes until lunchtime that started at 9.30 am (which meant that I was never walking to university in darkness – this helped a lot because I also suffer from S.A.D.). That 30 minute difference from 9 am to 9.30 am was massive. We had afternoons off, which I could use to study and do my coursework. Everything was generally in the same place so there wasn’t the exhaustion of going to and from lectures and tutorials back and forth across a large campus.  I also had a day off in the middle of the week which I could either use to do coursework or recover if I was having a difficult week health wise. I didn’t do any uni work on Sundays (ever – not even the day before an exam) and Saturdays were a day to chill and maybe do some chores that I had no energy to do throughout the week. It was all about managing my time and having regular rest slots.

My mantra was – there’s no point in getting a good degree if it comes at the cost of my health. I do my best, I live my life….and if that’s not good enough, I have to accept that.

I didn’t pull a single all-nighter during honours year. Not even for my dissertation. I knew that if I even tried it would likely set me back for weeks.

I did have setbacks, and some other health issues that popped up (not least catching mumps – ugh!) but the course was small and the department were amazingly supportive and kind. I always felt they had my back and I think that in itself helped immensely. Rather than being ready to mark a red pen for being off sick, instead when I crawled my way to uni they would say Are you sure you’re ok to be here?

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Struggling to stay awake at work

In a strange way ‘recovery’ has been the hardest part. You think you are better, you start doing more…and then you pay for it and you are right back to square 1 (or worse). When I first moved back to Edinburgh I would catch everything and be ill for weeks. Now I find that my immune system is slightly better and am more ‘fighting it off’ for ages before I finally succumb and get better a bit more quickly. I even managed not to catch a few bugs going around the youth project last year that everyone else got.

Perhaps that why this more recent relapse has felt like a side swipe.

I have to be careful about getting sleep – if I miss sleep I have to catch up with it quickly otherwise it is game over within 24 hours. I’ll get a cold, the brain fog comes (I’ll not know what day it is, struggle to string sentences together and just not be able to concentrate), I will feel nauseous and sometimes dizzy.

I also have to be careful about busy days. If I feel great, the temptation is to try and get lots done. MISTAKE. I’ll get so far and then totally crash. Just because my calendar is free doesn’t mean that my energy levels are. Sometimes an exhausting day is going to happen – like I deliberate took a day off after my sister’s wedding because I knew I would be exhausted. If I’m doing something with Girlguiding on a Saturday afternoon, I probably won’t have ability to be somewhere in the evening.

It’s also important to have understanding, supportive people around you. I’m very lucky to have that at work and especially amongst some of my close friends. I would have gone completely insane without them. They encourage me, reassure me, give me hope when I’m feeling hopeless…but most importantly they accept me exactly the way I am.

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The life and soul of a holiday with friends in Cornwall…

What I most love about the friends who have stuck by me, is that 11+ years of knowing me with this illness they get my humour about it. That’s my coping mechanism. When I’ve forgotten what day it is we have a giggle together. They will sympathise and laugh with you when you tell them how you dropped your phone on your face because your hand didn’t have the strength to hold it. They try to smile when I’m laughing about walking like an old lady/John Wayne. They send me pictures of things I like or a simple emoji when I’m stuck in bed. We talk about pyjamas like some chat about designer shoes. As an extravert I love being around people, and this illness really isolates me. So when I have friends that know how much I love being in their presence despite not really being able to participate and they allow space for that – it’s incredible.

To the friends that haven’t. I don’t blame them for not wanting to be friends anymore. It’s tough having a friend whose body can’t be relied upon. People have their own problems and worries and burdens. I really do get that.

I hope that one day we find some actual treatments for this illness. That would be lovely. But until then…we will keep on keeping on as best we can.

And if you are a fellow spoonie, remember that you aren’t alone. There’s people who do ‘get it’. Your experience is likely different from mine. You’ll experience different symptoms. Some of you had to give up university degrees. Some of you can’t walk. Some of you still can’t get out of bed. Some of you are better than you were. Some of you are worse than before. Some of you like me thought you were better and are experiencing a relapse.

No matter who you are or what your experience is…know that your story has value and it matters.

Thank you for being you.

Much love,

BK

Living with CFS…

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Living with Chronic Fatigue Syndrome is pretty rubbish. I haven’t talked about it much on my blog for a while, because in all honestly I was over it. As long as I managed my time well and avoided germs – we were all good. There’s always moments when I’ve been fighting off a bug where I get caught off guard, but probably since December when I began to have some issues with reflux, the symptoms of CFS have been slowly creeping back.

Last month I had planned to go down to Dunbar to watch a friend from Christian Surfers perform at a gig with Harbottle & Jonas. I had my tickets weeks before, was all ready to go down, my friend even invited me round for tea before the gig. But as the afternoon wore on I got more and more fatigued, to the point where my joints seized up and I couldn’t keep my eyes open. I ended up having to bail, knowing that it wouldn’t be safe for me to drive and just had to give in to sleep.

I was so grateful last weekend that my friends understood when I said I didn’t want to celebrate my birthday. They gave me the best gift ever – a place to come and chill. We had dinner, chatted, had a (for me) early night, a lazy breakfast, did a beach clean in the rain and wind, came back and all of us ended up taking turns to have showers, got into pyjamas, watched the telly (something I rarely do now!) and I ended up staying for a second night after getting pinned down by their dog who discovered that my long nails make for excellent doggy back scratches. It was such a relief to just ‘be’ and not feel like I needed to do anything or my friends feel like they had to either.

And I have to say I’ve missed their dog all week, especially this weekend as I’ve struggled. I wish I could find to words to describe what it’s like.

There are things that exist in life now that didn’t when I first got diagnosed – a horrible summer where I used to crawl to the kitchen to get food (anything cooked had to be in the oven, as I couldn’t stand at a hob), lie on the floor until it was ready and then crawl back to bed after.

  1. Wifi – I didn’t have internet at home until my final year at university, and even after graduating, I didn’t have it in some of the places I lived because it was a luxury I chose not to have to save money. Now, I’m so thankful for it, as I can work from a bed or comfy sofa on days when I’m struggling a bit.
  2. Online shopping & supermarket delivery – Though I much prefer as a single person to go to supermarket myself (because my share of the freezer space is limited to one shelf, and I need to get decent dates on things so I’m wasting less) on the weeks my joints are screaming at me and I can’t keep my eyes open, the supermarket bringing your weekly shop to your doorstep is worth that £1-3.
  3. Netflix – Has genuinely been such a comfort. Not only does it switch itself off if you fall asleep while watching, being able easily find show you’ve watched a squillion times before is lovely company when you’re stuck in bed. Often I can’t focus on a ‘new’ show or film as my brain gets foggy.
  4. Twitter and Instagram – This can be a blessing and curse. It can bring community to you, or it show how you’re being left out of community (I believe the kids call it FOMO). But overall, I’m glad they are there.

And things that did exist that I didn’t used to have…

  1. Good pyjama bottoms – Back in the day it was the David & Goliath pyjamas that kept me smiling on crummy health days. But then they went polyester (whhhyyy?) and all was lost for a while. Now I’ve discovered Fat Face pyjamas. They aren’t as ‘fun’ but they are super comfy.
  2. Pillows – I discovered these kind of foam pillows that give much better support than the ones I used to have. It makes so much difference.
  3. Blankets – Duvets have two settings – on or off – but blankets you can layer much more easily.
  4. Fairy lights – There’s something cheering about fairy lights. I now have fairy lights around my bed, on all my bookcases…
  5. Diffuser – My diffuser is something I think I’d struggle to live without now. Every night before bed I put my calming blend in. I have an energising one for when I’m working too. Electrical ones are great as they can be switched on and off easily. Mine you can set to switch itself off after 1 or 3 hours.

But something that has always been there and still remains are key friends who are incredibly understanding. I’ve lost many friends along the way due to them not getting this illness. I get it – I’m flaky and you can’t count on me to be there, so I really do understand why. It is the thing I hate the most. But there have been friends who have just simply been there without drama. The ones who text to check in. The ones who offer to shop for you. The ones who come and help you wash your hair when you can’t lift your arms to do it. The ones who come sit on a sofa and simply ‘be’ with you. The ones who drop baked goods at your front door to cheer you up. The ones who know when you have to cancel at the last minute and don’t get offended. I am so grateful for their unconditional love and kindness.

Those friends are worth more than their weight in gold.

You know who you are…and thank you x

BK’s YouTube Picks: Unrest

An article about this documentary about ME/CFS popped up on my twitter feed. I couldn’t be happier that this illness is beginning to get taken moe seriously and attention being drawn to it.

I was diagnosed with CFS in 2004.

I became ill with CFS some time between 2001-03.

It’s hard to pinpoint because in 2001, I wasn’t exactly looking after myself. The summer before I went to university I lost all my energy, had a really sore throat. I remember being on holiday visiting friends in the Netherlands and just wanting to sleep all the time. I went to university, got the ‘fresher’s flu’ and it just wouldn’t go away. After a month (and me collapsing twice one night trying to walk from my room to the toilets at the other end of the corridor) my friends dragged me to the doctor. Blood was taken. They discovered my glands were very swollen. They thought I had glandular fever – perhaps that I’d had it for several months.

By the next Spring, I seemed to be better…and was finally looking healthier than I had done in a long time.

Happy days.

Cue Spring 2003.

I’d had a cold, and again it just seemed to keep coming back. I was in the lead up to my final exams of second year and I was just tired all the time. Sometimes I woke up and couldn’t move my limbs. My joints hurt. I got blood tests for arthritis. My Mum panicked that I was developing Multiple Sclerosis. I would fall asleep in the library in the middle of the afternoon and have to be woken up by friends. I would be too tired and sometimes have to be walked home. I would be in tears with the pain in my joints and the exhaustion that no amount of sleep seemed to quench.

I got more blood tests. They tested me for pregnancy. (They never believe you if you say there’s no way you could be pregnant if you are a female university student).

All they could find was that I had ‘some sort of virus in my system’.

And they sent me on my merry way.

That summer was hell.

Some days I could have a normal day.

Other days I couldn’t get out of bed.

I remember my friend coming round and having to dry my hair for me – I couldn’t lift up my hairdryer. I remember crawling to the kitchen to put food in the oven and lying on the floor until it was ready. I couldn’t stand long enough to cook on a hob. I remember going to church and the 15 minute walk there exhausting me so much that I just lay on the floor at the back of the church. I couldn’t sit or stand.

I was really lucky.

I had friends that sat with me and didn’t expect me to be my usual chatty self. My friend kept me on his worship band team, and would let me sit if I needed to. He would even drive to get me so I wouldn’t use up this limited resource of energy walking. I had friends that took the time to tutor me when I hadn’t been able to absorb information in a lecture theatre. Friends that caught me when I passed out. Friends that drove me to the out of hours GP when I passed out in my car – again…I had a ‘virus’ (though once again, they thought I was pregnant and lying about it!). They kept me calm when I felt like I couldn’t breathe and was dizzy, or panicked because I couldn’t move my arms and legs. They send me notes. They gave me music to listen to.

I also had to put up with the people who thought I was faking it. Who labelled me as unreliable – like I chose what days I felt good or couldn’t move. One time I even got told off by a pastor for sitting down to sing. I didn’t often have energy in those moments to respond.

Eventually I got better. I don’t think CFS ever goes away fully. But I got better. I also got better at managing it. When I moved back to Edinburgh, it was difficult to explain to a whole bunch of people I didn’t know but as time went on they discovered it and supported me through it. My friends here are super lovely about warning me if they are ill so I can decide whether to ‘risk’ meeting with them as they know if I get ill…it can take me weeks to get better.

I’m lucky I never had to get a wheelchair. I was only confined to a bed for days at the time and I got respite from it. And I was able to keep working a few hours a week, and never had to take time off from uni. My grades suffered because I couldn’t go to every lecture and tutorial, but I still passed. And over a decade later, I’m rarely off work. I’m working full time for the first time in 10 years. I am discovering that my weekends usually require a lot of down time, but that’s ok.

I just hope more research goes into this. I hope better treatments are found. That there will be better support.

Hopefully this film will help with that.

A little hopefully not needed prayer request…

…many years ago, I was diagnosed with what used to be known as M.E., but is now known as Chronic Fatigue Syndrome. It was a difficult time. I had it full on for many months where I was essentially stuck in bed, and then a couple of years after where I was able to manage it by doing the bare minimum for university and a lot of support from my friends.

Over the last few years, my immune system has been a lot better. I still have to be a bit of a germophobe, but I can now suffer from a cold for just a few days instead of weeks, and can fight off a bug where I’ll feel under the weather but not taken down completely.

And I’m very, very grateful.

However. In the last week, I have been stupid tired. Like struggling not to fall asleep at work, falling asleep when I get home from doing anything. Stomach upsets when I try to push through fatigue. And today the horrible, horrible feeling of joint and muscle pain in my limbs (walking is not fun).

I know a few people are feeling a bit lousy just now – back to school bugs, change in seasons. And I’m hoping that’s all it is. But that little worrywart in the back of my mind is thinking this is an all too familiar feeling, and one that I haven’t had in a long time. So I’m praying that it’s just a passing thing, and by next week I’ll be telling myself off for being so silly to be worried!

And for those asking, the yellow and gold is going well. It’s become a bit of a joke with some colleagues at work where they ask where I’ve managed to sneak in my yellow/gold each day. It’s also led to some chats on social media with people who had no idea that childhood cancer research got so little funding because of its ‘rareness’. I’m posting a yellow/gold ‘selfie’ each day, it’s probably already boring as you see the same shoes, same nail polish, same tops over and over! But you can follow my very uninteresting instagram feed here. Nothing that I’m complaining about above compares to what too many kids (and their families) have gone through because of stinking cancer and the toxic treatments for it. So if my wearing yellow and gold gets people thinking and inspired to write to people who have the power to fund more research and support for families…I’ll continue to do it. I would like to do more but at the moment, not sure what I can do.