Are you Alone in this nightmare that is Fibro? How do you cope?

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.

LINK REMOVED BY ADMIN - contact me any time and give me time to reply!

5 Replies

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  • I can see that you have been on quite a journey Stephanie. Congratulations on the publication of your e book, what a tremendous success story! I bet your family are really proud.

    I don't write but I love reading and I have enjoyed being creative in my garden during the summer (joints and weather permitting) as I would like to open it for charity next year if possible. Now the weather has got colder I watch videos on crafting and have started to make cards using recycled materials to give to friends and family. I find it very therapeutic and wonderfully relaxing. Even if I only manage half a card a day I still feel as if I am making progress and I too love the sense of achievement. Thanks for sharing your story and inspiration with us. I am sure others will heed your advise and benefit from it too. All best wishes. Jane x

  • Thank you so much for posting your inspirational message Stephanie, you have done so well, you should be very proud of yourself! :)

    You certainly have survived through adversity and your philosophy and the way you deal with your Fibro etc is brilliant.

    I personally think that anything we find cathartic is fantastic, it doesn't really matter whether it's crafts, writing, poetry etc., anything at all. If it works for you and helps distract you, it's wonderful! :)

    I take my hat off to you, well done! :) (((hug))) xx

  • Thanks both. I was hoping to inspire and show positivity can work, not everyday, but most.

    cheers.

  • Thank you for your inspirational message. And congratulations on your book. :)

    I have Fibro and Sjogren's syndrome. The latter being diagnosed earlier this year.

    I believe I have had Fibro most of my life, since childhood, but after my marriage of 28 years ended and a subsequent relationship of 5 years on and off went very bad I started having pain and was aware of the fatigue long before that.

    I am alone and have no family or support from friends. These last 2 years have been particularly bad, nursing my darling sick cat of 16 1/.2 years till he had to leave me almost a year ago now.

    I got another cat friend of 14 as a foster cat in January this year but she was unwell and had to be put to sleep on 24th October.

    I have been suffering from depression and anxiety badly on and off all this year. I cannot tolerate anti-depressants, often finding they make me worse, keep me awake and being asleep is a relief from the misery of my boring and lonely days.

    I have been doing some voluntary work, but it's not enough.

    I used to make clay sculptures and now find I can't afford the classes. Being a very creative person myself I find losing my ability to be creative is one of the worst things. I have lost interest in almost all my hobbies.

    I now have problems eating and have a continual pain in my tummy like a burning sensation.

    This is due to anxiety I imagine.I feel scared and do not know what to do with my days. sometimes staying in bed most of the day.

    I am so lonely but even if I'm with someone I feel distant and unable to enjoy the company. Then get nervy when they leave.

    I have had a lot of counselling but it doesn't really help long term. This awful feeling keeps coming back.

    I used to work part time and do all sorts of other things but haven't since early 2008.

    If anyone has any tips for me to find friends and get my life back please please post.

    thank you so much xxx :<3

  • Dear Plumcake, what can I say? You are exactly the kind of person that gets let down by the NHS, GP's and social services. You become invisible albeit and this is hard for me to say -at your own hand. I have been there but I had loved ones who pulled me back from the brink. At the end of the day, despite support and pills, it is only you who can make the decision to fight this condition, and other illnesses yourself - loneliness being the worst. I had family and well meaning friend's but initially I could still feel totally alone in a crowded room full of good intentions. As for counselling you have to want it to work and understand the process and it isn't for everyone. Being creative is a good thing and has positive connotations in that it makes you feel good about yourself as does the voluntary work. Have you tried any forums for FM? Support is always there for you. There are many local support groups as well you can go to for friendship and advice. Even if these are beyond you at the moment try writing a journal so you are getting all your negative emotions and thoughts out in the open. If you do not like the idea of a journal, try writing it as a letter to someone you trust, dead or alive, they are never going to see it as you can burn it ceremoniously afterwards when you are ready to let go of the feeling's that make you feel so low. As for pills, antidepressants - they are many types and i was sceptic and had a few nasty experiences but know I take two sorts and most nights I get some depth of sleep, refreshing, and my mood feels positive but even I have off days, like today. I didn't get up until 3pm and the day would normally feel wasted - but I saw your plea for help and how could I ignore it? So I have done something positive and hopefully helpful by replying. I think what I am trying to say through my befuddled FM brain is that only you can decide what is best for you. I had no partner for over 6 years due to being raped by my last b/f. I stopped looking for love or a partner but it wasn't to be and love did come knocking at my door totally unexpected and had reformed my life - but it was me who had to decide to let this person in. We have a platonic relationship as I cannot face the intimate side of a relationship still but so far it is working. You must learn to love yourself all over again. Love truly begins with you, from inside you. So find the things that you love and make them part of you - for me it is writing, knitting, and making jewellery for gifts. The days you feel you cannot do anything, even whilst lying in bed, read books, or stories in magazines, don't just watch the TV there is no achievement in watching others misery -reading helps your brain to exercise itself and your imagination will flourish. Maybe all these suggestions are not for you. Try going for a walk, even if it is just to a local shop or park or round the block, or if you have a garden - go sit in it when dry and appreciate the life that is all around you.

    Well that's enough pontificating. I hope it helps somewhat

    ukfibromyalgia.com/ is another good site.

    Stephanie.

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