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‘Normal’ Poorly With Fibro/ME

I might be used to it by now, but every day is probably like living with a cold/flu without the cough or snotty nose. Aches, pains, fevers and fatigue is just a part of every day life, and just because I’m used to it doesn’t mean it’s any easier after a few years.

Every year the dreaded cold and flu season creeps upon me where I shrink away from every person on the bus who sniffs and hold my breath in the lift when someone coughs. It’s the time of years I rattle with supplements and alcohol hand gel becomes my best friend. Despite having a compromised immune system, I think I’m relatively good at avoiding the lurgy. But when it hits, it comes down like a ton of bricks, casting  veil of fatigue like nothing before over me, increasing pain five fold, the germs and ‘usual cold’ symptoms linger on and on and on. Well, if I’m going to be ill I may as well do it properly!

The virus I currently have couldn’t have picked a worse time. I’m about to have six days off work as holiday, my longest break in well over a year, which I’d set aside for studying and a day trip to see a friend. First came the swollen glands, then the sore throat and painful chest all washed down with complete exhaustion. Then I felt better for a day. Then it came back, and along with a blocked, runny nose came dizziness, light-headedness and a feeling of surrealism, altered vision and of course, the lucky bonus of increase fibro and ME symptoms. This resulted in me almost collapsing at work and having to be helped to the work car to be brought home. Not before I’d burst into tears in the toilets first because I was so scared. The funny turns lasted into the next day. I had to be dressed/undressed by my partner and dried off after a shower. Not your average cold you’d think. But it probably is, most people would feel awful for a few days, need a couple of days resting up with soup and hot drinks then be back with a spring in their step.

Living with symptoms and fibromyalgia and ME on a daily basis is tough and tests the willpower of even the most positive of people, but when germs and bugs find their way into that mix, it ends up in a long, drawn out period of awful symptoms and fear that it will never end.

I think  writing this blog has just been an excuse for me to get things off my chest after what has been one hell of a week, and it’s definitely not over yet!

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It’s A Crafty Life

I was taught to knit at an early age. Sitting there as a child marking off in a notebook the rows my mom had completed on her design jumpers for us as children and unravelling the wool, it was only natural I’d learn. I knitted tiny squares for dolls blankets and scarves for Barbie dolls but never learnt how to cast on or off, which was probably the downfall of my knitting career. Next I learned various types of needlecraft with mom and grandma when I was still very young and have a book grandma gave me in my stitching box today.

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Look at the price!

The box was a birthday present, probably for my seventh or eighth birthday, in my early days of being crazy cat lady.

Mom and I used to go to craft conventions at the NEC and I made numerous cross stitch pieces that are lurking in various places around my parent’s house. Ultimately, I left school and started work at sixteen by which time crafting had gone out the window.

To this day, I still don’t have a creative bone in my body, but I love sitting at home looking through mom’s latest designs and makes. She regularly sends me homemade cards and my flat is full of things made by her. More recently she has started her own YouTube channel (Wendy Lawrie) where she shows her devoted audience her latest creations and things she has received from other crafters.

Here is just a small snapshot of her creations from my flat, this post would be endless if I photographed and uploaded them all!

I hope you love all of these as much as I do, and please pop over and heck out her videos, they may just inspire you to be a little bit crafty on a rainy winter’s day.

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168 Hours of Chronic Life

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This blog piece is a brief outline of what I do in an average week. By brief I don’t mean I’m omitting some crazy party, long country walk or evenings with friends, I haven’t had energy for that in years. I have just left out the bits where I take medication, the headaches, struggle to get myself in and out the shower, dressed, and the awful insomnia I suffer from.  This week I haven’t had the energy to read more than a short magazine article, or even iron my clothes. Every last piece of energy I have is stored up for the important stuff like work and looking after the kitty (who provides endless cuddles throughout).  Writing this piece has made me realise just how little I actually do in my week. My week should consist of more university work at least, but it doesn’t. I wish it involved cooking yummy dinners, having tea and cake with friends in the evenings and taking pride in my home. I could go on, so here it is in all of its glory, my week with fibromyalgia and chronic fatigue/ME:

Sunday:

Leaving my wife at home with a hangover, I headed to a local cafe I’d never been to before to try and get some study time in. With a bacon sandwich, a free WiFi connection and a few cups of tea I managed to write a few hundred words of an essay and get a good start on research. Feeling pretty mentally exhausted I headed home after a couple of hours and tried not to feel guilty about my daily nap as I’d had a productive morning.

Monday:

My long day at work always worries me a little, but I had a productive one. Feeling utterly wiped out long before 5pm I slowly made my way home, and as usual, had headed straight for bed. There was no way I would be able to do anything else that evening unless I slept. Two hours later I got up, had dinner and had my daily struggle with my shower. Another night of struggling to get to sleep followed.

Tuesday:

After a few hours of broken sleep I woke feeling rough, swollen glands, a sore throat and chest. I spent the day worrying that I was getting ‘normal’ ill on top of the usual fun stuff. Feeling super poorly by the time I woke from my post work nap I spent the evening in my pyjamas (again as usual) dosed up and knocking back the vitamins in a bid to stop the inevitable.

Wednesday:

After quite a few hours of sleep (it’s always a bad sign when I actually get some shut eye) I woke late on my day off, and felt like a virus had really taken over my already tired body. After calling mom to wish her a Happy Birthday, I headed back to bed with a cop of tea and spent the day there, with no appetite, feeling weak, sore and afraid of how exhausted I felt. With no energy to cook, I  ended up eating take away for dinner, probably not the best option so I blitzed up a smoothie with fruit juice, berries, banana and natural yoghurt later in the evening. Showering was a struggle but I felt much better after a good scrub.

Thursday:

After a rough night’s sleep it was off to work, still armed with my swollen glands and dodgy chest and throat. Work is usually a good laugh but I had slightly too much fun which resulted in a funny turn and feeling like I was about to pass out. After struggling home it was straight off for my rest which found me sleeping for over three hours, long even by my standards. But I awoke in pain, struggling to swallow, my chest hurting and with a locked jaw. My jaw continued to keep locking throughout the evening and night and woke me up  with the pain. Still without he energy to cook, I finished yesterday’s take away for dinner.

Friday:

Feeling better in myself today, but in quite a lot of pain, after work I took a diversion home and was exhausted beyond words half way back. I could barely get out of my rain soaked clothes on getting home and headed straight for the usual; bed. I fell asleep with the cat on my side and woke up on my own but in awful pain, and couldn’t get back to sleep. After a long chat with my parents, an evening dosed up in front of the TV followed before I decided to write this blog.

Saturday: 

Well, I haven’t got there yet, but I’m hoping for a lie in, lots of uni work, endless cups of tea and kitty cuddles, and of course, a good nap.