I thought i should do a check in while im capable,it’s now Monday 9th September 05.50am, I began writing this blog on the evening of friday 6th September, I’m also not sure if i will remember writing this later,
I never really accepted my diagnosis of fibromyalgia, with everything else wrong with my body, how could i have a ‘fake’ illness as well?, there is a very real misconception that FMS is not real, it is often known as the lazy illness, myself included, but i can assure you that it is very real, People do not understand how debilitating this illness can be, how it can strip you of your emotions, your ability to do simple day to day tasks, your memory, cognitive disruption, how much your pain is heightened, especially with my other illness that causes me great pain, a fibro flare is stripping me of many abilities, how long will it last? that i can not answer, a flare can last from a couple of days to a few weeks, i pray that this one is over soon. I have made notes through the days to help me to write this blog, Although i don’t remember making notes, in the evening i seem to be a bit more ‘normal’ for a couple of hours, which allows me to do things and make decisions although i won’t remember it later.
9/9/19 – Im also no longer sure that this is a fibro flare, the pain i feel upon eating and drinking is excruciating, this is not something i have endured before either during a flare or my liver disease, it is totally different, my abdomen goes very hard and swells, it’s very very different to IBS symptoms which i have managed to control very well. I have used our friend google to have a look but the pain and swelling is not in the categories of my other autoimmune illness, i really do not need a new symptom im not sure i could cope with something else right now.
Friday 6/9/19 – Its been weird sort of day, so i know something in my body is not working correctly, I do not remember the long conversation that i had during the night with my daughter about the cat meowing to get in her room, then it coming to sleep with me…, I do not remember making an omelette for my breakfast, i usually have fruit and yogurt for brekkie, luckily i took a pic of it lol, I do not remember going to bed last night, I do remember getting up this morning and then waking in my bed at tea time, what happened during the day i have no recollection of.
Sat 7/7/19 – Today i have prepped 4 days of salad and 4 days of fruit, all weighed, measured and boxed, I do not remember doing this, also i don’t food prep in advance !!!!.. I believe it took me almost 3 hours to do this!!!!, I also wanted to go to the shops apparently, what i do remember is when my hubby left me outside of the shop to pop in i had an overwhelming fear of not knowing where i am or going and shaking, it was very scary even though he was only gone a few minutes, from there we popped to lidl i have no recollection of this, but do have the receipt and yogurt in the fridge to prove it.. I do remember being in BnM, and bumping into a friend who also has fibro and said she understood how i was feeling, then im crying, it’s so embarrassing and im now hot and upset and just want to go to bed. I do not remember going home. My next memory is of waking up in bed this evening then starting to crochet a blanket.
Sun 3/8/19 I have much confusion today and am very thankful for the salad and fruit boxes i made, all i have wanted to eat is fruit, yogurt and jam sandwiches!! so that’s all i have eaten, i have been back to bed today, I do not know what time i got up this morning or this evening, but i do know that i have finished the first panel of the blanket so guess i should carry on with it, and also that when i awoke this evening i was saying i need to make round crochet sausages and round swans…. What the Beep are those.. lol…I’ve just been sat with my head in my hands trying to think of what else i have done today, it is so frustrating and at times upsetting just trying to recollect what i have done, without relying on other people to tell me what i’ve done.
It’s now Monday morning still, 9/9/19 and its 07.17, after reading through this to check spelling and update etc while im capable, I can’t believe it has taken me over and hour to do this, i awoke at 5.15am with such a powerful headache that i had to get out of bed, no idea how many times i was awake throughout the night, i know i have had a very restless night though, this morning i have had 3 cups of hot chocolate, i usually have black coffee in the mornings and a hot chocc before bed, im guessing my body is still in night mode…
- What the rest of the day holds for me i have no idea, but i would like you to spare a minute to think how you would be in the shoes of a sufferer, so that you can be more aware of the illness that is very real and not fake..
- Not being able to remember what you did half an hour ago.
- Feelings of fright not knowing where you are or how you got there.
- Feelings of horrendous nausea.
- Your pain senses heightened, feeling pain everywhere on your body, even though you haven’t had a knock or an accident, your head hurts, your joints are stiff, your body is burning and or tingling, sharp or aching pains all day everyday. (imagine having flu and not being able to get over it for weeks)
- Feeling very confused, again cognitive memory problems.
- Extremely fatigued.
- Poor sleep quality.
- Feeling dizzy and being clumsy.
- Not being able to regulate your temperature, i go between hot and cold never just ‘normal’.
- These are just a few of the symptoms i suffer from, but what upsets me most is not knowing how long it’s going to last until i feel better again, my previous worst episode was 8 weeks, please pray it doesn’t last that long, i should be looking forward to my holiday in 3 weeks time, and not worrying if i’m going to be ok to enjoy it. I really need to go back to bed now, thank you for taking the time to read.
Please enjoy your day wherever you are whatever you are doing, chat soon xoxo
3 Comments Add yours
My word, that’s an awful lot to be dealing with ☹. Thank you for sharing, I had no idea just how rough things can be. I do hope this episode eases before your holiday.
Thank you, I pray that too, but on a brighter note I’m feeling better than this morning, I’ve been awake longer today I’ve even managed to prep a couple of salad and fruit boxes, and aware of it at the moment lol, but now I’m shattered so going to sleep and then either the hubby or daughter will help me in the shower, I do not have the physical strength to wash my own hair, another thing I really hate it took me a long time to ask for help, just hoping today is not the calm before the storm as it has tricked me before.,so I’m keeping fingers and toes crossed lol
Well done for managing your salad and fruit boxes, fingers crossed you’ll remember. Hope you feel nicer after your shower 😊. Rest well
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