My Story

[gemarella]

As I cannot sleep again, and writing seems to help, I thought I'd get it out of my system here. I'm one of those who moan daily on my Facebook status, even though it's inappropriate. So, instead of boring my friends and family, I'll put it in this little corner where I feel comfortable offloading.

I'm Gemma, I'm 29 and I was diagnosed with Fibromyalgia back in May. This is how...

Four years ago, 2 weeks after returning from my summer holidays, I started getting a pain in the right-side of my chest. I ignored it for a few days, but the pain grew worse. Then, one day, as I started running up a hill, I fell to the floor short of breath. I managed to make it home, but by the evening, I could barely breathe. That night, my partner rushed me to hospital. An Xray found that my lung had collapsed and I had to have the air surrounding removed.

I was told that I would recover quickly. Unfortunately, I didn't. I went through a ton of tests in the following years, only to be told many times that I shouldn't be in pain as there is nothing wrong with me. I have been taking painkillers every day, been on many different anti-depressants and seen psychologists. I was once told by a specialist that heavy metal music made my lung collapse and also told by a doctor to "snap out of it".

In those four years, the pain has worsened and spread to my ankle, knee and back. I was very relieved to have been diagnosed with something that had a name. My life has changed greatly since the day my lung collapsed. I no longer see my friends, rarely see my family and have given up everything that I once enjoyed. I was 25 when this began and, in honesty, I have 'grieved' the loss of who I once was.

Being a mother, seeing my son grow up has been difficult. I once took him places everyday, played football with him, wrestled with him, played him on the Xbox and pushed him on a swing. Now, it's too late to do some of those things and the others are just not possible. It's hard trying to explain to him that I am hurting. He has Aspergers and I completely get that he just doesn't understand. I am more that just his Mam. I was a very young mother and we're like brother and sister. Now, he's as tall as me and a teenager. I find that difficult. They grow up so quickly. I wish, if anything, my son was older before this happened to me.

I am an optimistic person in general, and I've spent these four years trying anything to get better. Only, just recently, I was told that would never happen, and I'm finding it really hard to take on board. I'm still trying everything to get better, I just don't know how to stop.

Learning to work around the pain is challenging, but I'm determined to find ways. I do everything I can and exercise everyday. I'm getting there. As well as Physiotherapy, Hydrotherapy and Occupational therapy, I am taking care of myself more.

The worse part of this all is the guilt. I had got engaged just months before this happened and moved in with my partner. We had such a fun couple of years before and I miss that. For the most of our relationship, I have been tired, depressed, angry and useless. I am so lucky to have a partner who is so loving and helpful. He has helped me through the hardest years of my life. The guilt weighs me down. He deserves somebody who is as full of life as I once was. Most days I don't wear make-up, I sit around in my Pjs, rarely leave the house and cry often. We are so much in love, but I wish I could be more like the person I was when we first met.

Having a name for what has happened has changed my life for the better. Nobody believed me for so long, but my partner has fought hard to help me and I am so grateful. Knowing I have support has kept me going and I think things are going to keep getting better now.

[Extremelygrumpy]

Wow sounds just like you are writing about me , except I am a older, my fibro was triggered by an op that went wrong diagnosed almost immediately by my very good then gp at the age 25 I did recover to a good degree and went on to have 7 more good years then I had my son who has aspergers, now a teenager and the effort of trying to work full time coping with a toddler with aspergers and run a house I crashed and burnt big time gave up work and became a very inefficient housewife and mother.... At age 35.... Even up to..4 years ago I was still hoping to get back to being ME when I was hit overnight by arthritis .. I went to bed and couldn't get up in the morning.... Spent 3 months in a wheel chair then graduated to sticks which is where I am now.... I was then referred to rheumatologits saw 3 different ones and they all said this is you from now on... Had never been told that before had a mini breakdown when I came round i was in hospital under police guard.... Thats when I started the grieving process and last year I finally accepted that although in my 40s I was in this body of a 70 year old and it's so hard to live every day in pain. My OH is fantastic my son is .. Well he's just my son, he can't empathise or sympathise and he's a teenager so we have good and very bad days. Some days I just don't want to be here I want an end to the pain but I carry on for my family.... I have left my body to medical science in case it helps just a tiny bit for people to poke and prod me when I am gone and maybe just maybe they may find out why my body stopped working.

Thank you so much for sharing

Hugs VG xx

[louiseelcross]

Hi Gemma. Dont ever feel that you are moaning cos its good to talk. At the age of 52 I have had this condition for over 30 yrs but only diagnosed in the last yr. All my problems were put down to depression for years. I am glad that you have someone who cares for you as I have been on my own now for 13 yrs. Like you I am in pjs all day every day and in my bed that is in my living room to make life a bit easier for me. I have electric blanket on 24/7 because I get so cold and in pain as I also have raynauds. Two yrs ago I had the second holiday of my life and went to lanzarote. while there I realised that I was not in as much pain and stiffness and was much warmer and calmer. I have decided to move there as soon as I can raise enough money to do so. I have now got hope that one day I will work again.

If I had been diagnosed when I was younger my life would have been so different but I wasnt. I spent many yrs thinking I was going insane complaining of pain and inability to stand up in the mornings and everything else that was happening. Now I am angry that no one believed me. We have to be positive though and plan ahead.

Please dont feel guilty as that can make you feel worse. Its not your fault that this is happening to you.

All the best to you and your family.

All my love, Louise. x

[Hidden]

You're not alone. I'd been going through ill health for at least 10 years before finally being diagnosed last week. I had periods of of good health and in those times I became a workaholic/party animal, didn't need much sleep.

My daughter was older and due to my work, she spent the weekends up the road with my mum. It was nothing for me to go out on a Friday night and then work all day Saturday, then out again Sat night etc... This was how my partner met me 6 years ago. Active, bubbly and full of life. I didn't know at the time that the mystery 'virus' I'd had some years previously would come back after a series of other ailments. Mine started with arthritis in my foot in Dec 2010 and since then, my health has gone downhill rapidly.

I also live in my PJ's, thermal socks, slippers and blanket every day. My relationship with my daughter has broken down to the point where she won't even acknowlege my texts. She's 19 and at uni, but she is unwilling or unable to understand that I can't do cooking, shopping trips etc. She thinks I'm a "lazy faker" who doesn't want to do anything but live off the state and I can't send money. I've been working since I was 15 and have only not worked whilst my daugher was small. I returned to work when she was in primary school. I was also a single parent at the time and it was a struggle but I had an example to set and a stereotype to break.

My partner has his moments, especially when his belly's empty! I can't stand to cook due to the arthritis in my feet and the fibro now affects all my major joints from my neck down, including my elbows. I'm sure you understand the pain that comes with it.

Everything's a struggle but they just don't understand. Please feel blessed that you have what sounds like a very loving and compassionate partner.

But I've got my coping strategies. When i can't take anymore I go to bed and stay there. He soon gets the message!!!

He'll be expecting a big Sunday dinner today, but I'm already exhausted and it's not 9am yet.

I'm 40 next month. No point planning anything. I don't see family or friends either. My closest friend lives on the other side of London but she calls me every couple of days. I don't even see people who live round the corner, but I've got to the point where I don't think I can deal with visitors anyway.

My mum is my blessing. She's a pensioner with 2 bad knees but she's the one I can rely on for anything.

I think if we have one person who we can rely on to help us, then maybe that's enough. It does put pressure on them but I believe people come into our lives for a reason. Your partner is there for you. All you can do is let him know you're grateful for the help he gives you and that you love him.

I wish you a ver blessed day with much love xxx

[beth2]

hi gemma as the lovely ladies above said you dont have to be sorry and you are not moaning sweetheart you are letting your feelings out which you need to do everything you have said is so true to myself I dont go out much now once a week for sunday lunch ( and sometimes that is hard ) my friends dont seem to bother much now (they enjoy going shopping but i cannot walk around the shops now my shopping is done online) when you said what you used to do with your son I know what you mean I did with my son but you can do other things with him like I do with my boy we sit at the table and play board games or watch dvd I do still have one friend she has health issues herself so she understands like all the lovely people on here do you take care sweetheart and everyone on here do understand honestly love beth xx

[Dixiesdaughter]

Hi gemma I was moved to tears when I read your story snd the the stories of those who replied to your blog. I think all the stories will strike a chord with all the fibromites who use this site. We all share a common bond not only with this horrible debilhitating illness we all suffer from but also in our jounery to reach an acceptance of who we are now and what we have 'lost' by having fibro. Add to the mix the weird and wonderful symptoms we deal with on a daily basis, the pain this illness brings and the lack of understanding from professionals family and friends and is it any wonder we feel like complete crap and often question the value of a life living with this wretched health condition. I hope sharing your story helped to release some of the pent up pain rage and frustration and you get some comfort from the fact that in this little haven your fibro family trully understand and empathise with every word you wrote.

Heres hoping that with pacing and support your pain levels become more manageable overtime and that gentle hugs sent from all on here give you some kind of hope & strenght. Take care and god bless

Ps to all those who responded I am praying that you all find peace comfort support acceptance and love in your lives god bless you all xx

Dixie xx

[mollyanna]

It has taken me over 20 years to get a diagnosis ,I was told by my GP at that time I was menopausal and would be better when I was 50 now nearer to 70 and just got a name to what I have been and still suffering from all these years .You may find that although you still have pain, some periods in your life when things calm down some what, Make the most of these times ,and cram as much in to your life as this horrible disease will allow you to, don't give in to it .

[chicme]

hi gemma , your so lucky to a very good partner coz mine has made me worse over the i believe with his drinking cheating an abuse. the amount of stress i had over the years has the pits i have cried so been close to a breakdown for many years that i have now ended it with him he now lives with me as lodger for the past 5 weeks i have no feeling left for him at all an i have no respect for him .the only reason i let him stay is i cant afford to be on my own as the dpwp have drooped my money i get £280 a month i own my own home but i still have bill to pay. but at least my stress levels have gone down so very much its great not being woke up at 4 in the morning with a drunk abusive d- ck head its bad enough having fibro an bowel problems .

[michelle62]

i really feel for you as this is what i feel like but find it to difficult to explain to other people, i find that as i work all the energy i have goes into that and i have nothing else left to give,i am a support worker which i sometimes laugh at as really i could do with the support, but i m not ready just yet to give up my job i think its the only thing keeping me sane,except for the days of total exhaustion and i don't know how i make it through,i feel so sorry for my husband then another day i think i wish he understood this horrible illness, sorry for the rambling just need to get it off my chest, wishing you well michelle