Last few days have been HELL

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.

I am still alive - Just

I seem to be ignoring my blogs a lot recently. I can assure you this is beyond my control. I have been going through some rigorous medical examinations, testing and operations in the last few months.
D'ya even know what? I can't even remember if I blogged about my operation in September?
Anyway, after surgery I tried the medically induced menopause route. The first month worked wonders. I then bled for 23 days following my FIRST smear test. The second months injection sadly took no effect though.

Each time I see my doctor she says I am getting worse and although of course, I already know this, to hear it from a respected medical professional, well it opens your eyes just how bad you get really. 
She was really upset when I saw her a week or so ago, a generally concerned feel about her.  She told me that with the gynae problems still undiagnosed and no logical route to diagnose through the out come would be probably the removal of my whole woman-hood.
I will not get all funky - hippy and comment about how that would of made me feel. Instead I will tell you, thankfully - she was wrong.
There was times of course, when I screamed ''just take it all out, I've had enough'' EVEN THOUGH I want more children later on in life - if my health lets me.
Anyway, a quick consultation with the gynaecologist and he told me I had NO gynae problems. This was IBS.
Now, no Sonia-Story is that straight forward is it? No.
Well - Do you remember for at least a whole year now I have had abnormal blood results? Showing a raised CRP level (That is a sign of inflammation / infection).
This level is STILL raised, and as far as I know, IBS does NOT cause inflammation. However - Doctors generally do mis-diagnose Coeliac disease with IBS - SO, maybe just so - it's the coeliac disease.

Time will tell - all I can say is that I am now grateful I am on medication to stop the terrible spasms. The only down fall, is at the moment with my asthma flare I am on close to TWENTY tablets a day!

There are so many pieces to my puzzle I get so tired relaying it on my blog.

I am also having blood pressure issues, while she was testing she was in disbelief. But in all fairness and credit to me - Being in pain DOES raise your blood pressure.
You see, when I say I am tired and in pain - I mean it. 

Unless you can walk a mile (or even a minute) in my shoes, you will sadly not even come close to understanding.
Don't get me wrong - I have a few fantastic friends and one locally and she is my rock, if I am having a particularly bad day I can go to hers and 'unwind', talk to her about my woes - she does the same too. We help each other. 
At the moment, I only feel there are two people I can open up to with ALL my worries and she is one.
It is no hidden fact I am in an unhappy marriage and I have been for some time. It's already breaking my heart thinking about a life without her. The other person, has been in my life since 2008, just after Meghan was born. She and her family have prayed for Meghan through surgery and I haven't shook her off since ;)
She is always here (on the computer and at the end of the phone) with superb advice and we have a great laugh too. 
I need to take a few steps back and really realise what I want here - Do I want to leave or do I need to fight for this house? Can I really justify fighting for this house, keeping my children at a shit school, keeping my health and my children's health in the same surgery that have such useless male doctors, even the new Locum is equally as shit.
He was in the same room when the Rhumatologist finally diagnosed my FMS, CFS and Raynauds. Yet only 2 weeks later he denied hearing the Raynauds diagnosis. (I wanted tablets to improve my blood circulation as I was going camping in the caravan).
I love her to bits, I love that despite that druggy prossie living next to us and splitting our friendship a year ago - that we managed to re-build it and if anything, we have built it so much stronger now. No prostitute will ever split our friendship and friends like these are in-valuable. 
I want to be here for her and the birth of her child, heck this is what I want my career in for goodness sake, Natural pregnancy, birthing and breast-feeding - all of which my best friend will be doing in only months time from now. I want to be here for her - I have the best knowledge to hand, I know the best techniques - I want to do this, not just for me but for her. I want to ensure she gets the best support available and I strongly believe that support is ME.
My facebook natural parenting page is approaching 700 members. 


Anyway, I shall end it here. I will update this once I have seen the rhummy on Wednesday - I have a list as long as my arm to speak to him about. More importantly, I want to be accepted on this 'Fibromyalgia Coping Skills' Course. I want to learn to manage my conditions better and I want to get a grip with it, before it takes my everything.


Keep warm and keep well.