In regards to my previous post about having Fibro for life I had some lovely comments, thank you all, and I agree it is like ' mourning' the old you as was said,
it is a process of grief, anger, resentment, depression, the 'poor me' syndrome and finally acceptance and adapting your life to the new you and some days its bloody hard!
I go through periods when all my good positive intentions go out the window, I have a few days ( sometimes weeks) in bed or stuck in front of the TV unable to do very little. One day I get up, shake it off, and begin again - but I have support and it made me think....
for those who are alone in this nightmare, how they must manage?
Family and friend's, a good GP or practice nurse I think are essential. Support groups have their place as do these types of forums etc, but there is nothing like the close company of understanding friends and family.
It must of taken me at least five years to educate my support circle as to my symptoms and needs and a few still treat me like it's 'all in my head', I am a hypochondriac, and it is not until they see for themselves first hand, how bad it can get. They slowly come round, after all it is a very good actress/liar who can keep up a pretence of a chronic illness for so long!
What does the person with and unsympathetic circle do? Or an employer who only thinks of days off and time/production lost, instead of your health and struggles?
I worked for the DWP as an Intervention Officer for Housing /council tax benefits for 6 years and I loved my job. I would visit claimants in their own home either to help them fill in forms, or help them with their claims and sometimes I would do fraud investigations and correct claims. It was demanding, stressful and physically tiring. East Staffordshire is a big county and mostly rural so I did a lot of driving.
I do have other co-morbid conditions like under active thyroid but my main condition is Hypermobility Syndrome. These were both diagnosed in 2005. My hips sub-lax, I have had three pelvic floor prolapses, and scoliosis of the spine plus a few other things - then in 2008 I suffered a physical trauma at the hands of a 'friend' The fibro that I am positive I had since glandular fever at 15 really kicked in. I had a complete nervous breakdown.
All these factors made for a very unhappy me, totally depressed and destroyed. It was only my own daughters who had to care for me, my family etc that dragged me back from the edge. I recovered my life thanks to their patience, understanding and support.
How does someone with out others to care for them manage? I would love to know.
I lost my job at the Council due to their inconsideration and stubbornness, basically driving me mad until I gave notice. So much for their 'disability awareness' badge of honour! I was too tired and broken to fight them and I lost everything, so it seemed back then. It was 2008
I had counselling, person centred and BCT and it did help. I would advise anyone who has no-one to talk too about all their problems associated to FM or illness in general to seek out a professional counsellor. I got my session free at MIND, the charity. They can only go so far with free sessions so I badgered my GP for a referral to the pain clinic, and had the cognitive therapy there. My experience would not be your experience and it isn't for everyone, I acknowledge that. BUT, it is another weapon in your arsenal to use against the beast FM.
Since 2008, I have remained at home, on benefits feeling useless and unproductive at first but the therapy helped to change my view of this cursed illness and I now fill my days as creatively productive as I can manage to. I began writing, with little experience of English language so I read, I practised, I re-educated myself an am the first to admit I have still a lot to learn - but voilà! I have just published my first e-book!
It has taken me 5 years and I have done poetry and short stories too and even if they never do anything in the publishing world, they did me a power of good and I love it!
Writing may not be everyone's choice to express themselves, crafts are another good outlet which when you complete a project you have sweated and toiled over, whilst in pain and fatigued, you have this release of good feeling endorphins 'Look what I've done!' syndrome.
My family just twitch and flinch when I have these outbursts now and gratefully receive the badly knitted cardigan which they know took me 3 months or more.
I went through a lot of crafts, and money, until I found my niche. It also took time to establish a routine, of writing, planning and pacing myself and also not berating or feeling guilty when everything went south like it often does with this blessed infuriating condition, BUT (yes another of my butt's -lol) IT CAN BE DONE!!
Patience, planning, and pacing yourself with a good dollop of self forgiveness when the days of doing nothing come round again....
I hope those who have no-one to talk too, no support or encouragement can see there is light at the end of this daily fight and there are people out here on sites like this, who will help and make your difficult days a little easier to handle.
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