So, I am having a bad day today. I had a bad day yesterday too. Some things are just not changing.
Yesterday I woke with a dull pain in my legs, and felt it was going to rain. An hour or so later we had a huge down pour.
Today, Everything hurts. It has now gone very dull, so I presume about to rain - again.
I managed to only get off to sleep at 7am this morning, I have the Facebook links and statuses to prove it too.
I must of finally got off around half 7am and then I had 4 hours sleep and managed to get up at 11:30am.
I woke but didn't want to get out of bed; however I want to break the cycle of my sleeping patterns so I have dragged myself out of bed today. Some may think this is an easy task. Not for me I can assure you.
I have had to buy myself an electronically adjusting bed - just to help me get in / out of bed.
I had a very weird experience yesterday morning (Monday 23rd) I had settled down to go to sleep and the next thing I knew I was sweating profusely and I felt very weird. My left eye was completely shut, my right eye half open but I couldn't open it any more. I was unable to move and paralysed. I was unable to call out as well. I felt like I was having an out-of-body experience and in particular it felt like I was about to pass away.
It was *VERY* scary and something I do not wish to repeat.
I wasn't scared at first but the longer it went on, the more scared I got.
Anyway, with other recent news, My mobility scooter is on eBay. I am still using my manual wheelchair to assist me in the kitchen, I have been able to unload and load the dishwasher and cook meals.
I did try to use this manual wheelchair out and about locally, when we had to go to the bank to sort out paperwork. However, by the time I reached the ticket machine I knew it was a very bad idea and had to send my husband back to the minibus to get my scooter out instead. I propped myself up against a wall, head in my hands in so much pain, discomfort and fatigue ripping through every bone and muscle in my body. A lovely local lady came over to help, asked if I was ok - This is the first time someone has offered me help while I am in this much pain; even my husband doesn't offer.
So you see, there are some good mannered and sensitive people out there, the world isn't always full of non-believers and imitations.
I have nothing else to add, apart from this lovely; but true poem.
I did not write this, therefore can not take credit for it.
It describes my life and condition easily, But please remember - I have many conditions. FMS is just ONE of them.
I was diagnosed with Fibromyalgia in October 2011 and have suffered from at least 2008.
I suffer from so many associated symptoms.
What You Should Know About Me
1. My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
3. My forgetfulness – Those of us who suffer from it call it Fibrofog. I may not remember your name, but I remember you. I may not remember what I promised to do for you, even though you just told me seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have selective memory. On some days, I just do not have any short-term memory at all.
4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are on the stairs behind me, please be patient. These days, I take life and stairwells one step at a time.
5. My sensitivities – I just can’t stand it! “It” could be any number of things; bright sunlight, loud or high-pitched noises, odours. FMS has been called “the aggravating everything disorder”. So don’t make me open the curtains or listen to your child scream. I really can’t stand it.
6. My intolerance – I can’t stand heat either. Or humidity. If I am a man I sweat....profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised of I shake uncontrollably when it’s cold. I don’t tolerate cold either. My internal thermostat is broken, and nobody knows how to fix it.
7. My depression – Yes, there are days when I would rather stay in bed or in the house or die. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
8. My stress – My body does not handle stress well. If I have to give up my job, work part-time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken and nobody knows how to fix it.
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