We held a competiton on our facebook page, and these are our winners:-
Written in their own words:
Annie Ward Hi everyone i am annie i am 39, i believe i have had fibro since a youngster, after having many years of being treated like a "naughty child" when i was 17 i left home and took myself to the doctor diagnosed with anxiety, depression and insomnia and put on antidepressants, by about 25 i was constantly in pain and put on zapain and told as a carer i work long hours i should expect to have joint pain and was dismissed with yet another prescription of zapain, i left the doctor feeling like a hypochondriac, i started to develop migraines and was taking ibuprofen until i started vomitting blood, yet another trip to GP i was sent for a endoscope which showed i have GERD put on omeprazole and again dismissed. my breakthrough happened when my GP retired and my new GP called me in for a medication review saying i should not be on zapain long term i expained that i have pains in my hips knees elbows basically every joint, i explained to her what my old GP had said and she laughed saying i have fibromyalgia, she stopped my zapain and put me on amytryptiline say this would help, she changed my antidepressant for a stronger one that is best suited to anxiety, an touch wood things have eased, she still allows me to have zapain just not as often as i used to, this lady is so supportive but it took me 13yrs to finally come to a definately diagnosis one i can deal with, this group have been super and has got me through dark times. in order to stay positive i love helping others as this takes my mind off myself. i am a care manager, an admin on this group and i have a menagerie at home,
by focusing on making others life better it gives me a real sense of full-filment.
Denise Wood Hi I'm Denise I'm 47, 2005 my kids were little I had just come out of a abusive marriage and working nights as a carer I would take the kids to my mum's then go onto work pick them up in the morning drop them of at school sleep for 3 hours pick them up, spend a bit of time with them and do the hole thing all over again until I started getting anxiety and bad depression and sick days I ended up losing my job, then I had a massive breakdown of which I'm not proud off I hit the booze for a year!!! But I did get put on anti depressants, at this point I was starting to get aches and pains and I was just so tired I felt I could sleep all day and night! Then i meet someone and got myself a new job 24 care work all though the job was mainly just helping the clients and cleaning plus sleeping in, the cleaning was too much I couldn't do it I was in to much pain and I never slept much whilst there, at this point I was starting to get daily migraines too, so after a year, one night at I blacked out woke up in the ambulance I got blue lighted to hospital spent 2 weeks there they did every test under the sun couldn't work out why I was in pain but the migraines were down to me having a stroke I was in my 30s, I lost my job but my partner started by my side whist we tried to work out why I was so ill cos I wasn't getting help from my gp I found a migraine doctor in London I was getting really bad migraines spent so much time in bed! After a couple of visits he had got my migraines under control and told I had fibro (I took 6 months ) so after a trip to the mineral they told me yes I have it plus ME so jump 6 years later after I really don't no why I stayed with my partner he spent all his time like my ex hubby in the pub so I kicked him out 7 years ago, but 2 years ago after I was raped my fibro got worse again and now I'm losing my sight only in one eye but it's so bad I can't read books, menus etc, so what keeps me positive it's the kids all though there adults it's always just been me and them, Kieran makes sure I'm ok on my day days or if mine ill, George helps me if we're shopping she reads everything for me, Kieran and his little peep talks keeps me going, but I also focus on them i keep going for them im not going to give in to fibro i have to many dreams I want to do with my kids and I think getting for me getting Milly was the best thing I ever did I have to get up each day and walk through my painful days and she gives me so much love back so yeah I've been through crap but I'm a fighter
Della Gregory As a child I was always extremely hyper and active, I was always on the go from the moment I woke up to the moment I fell asleep which from what my mum has said was from 4am until midnight! Poor mum lol I just loved being on the go though, running around and barely ever sitting still... leaving school I got myself a job working in a very busy kitchen which I loved as I have a passion for food and also it was so hands on I got to run around all the time busy busy, after so long I decided I wanted a career change as I could keep my passion for cooking at home so I then went into retail as again it's a fast paced hands on job... I loved it that much I often worked for free doing over 100 hours a week getting paid for only 39, money has never bothered me you see I just loved to be on the go... I started to get my pains at the age of 19, it started in my wrists and ankles then gradually over time into my other joints, I never let the pain get to me and I was able to carry on doing what I was doing as i loved my job so much, I had worked my way up to being management which meant more responsibility and more running around, I started seeing a rheumatologist about my pains who at first thought I had joint hypermobility, he later believed it was actually rheumatoid arthritis and also numerous other things but never an official diagnosis, I would see him every 3-6 months where he would take between 9-11 test tubes of blood from me, measure and weigh me, take a urine sample plus do my blood pressure... around the age of 22 I decided on another career change back to working in kitchens as my dream had become to own my own restaurant or hotel someday so i wanted to put my management skills into kitchen work... my pains started to become worse over the years but again the more pain I was in the higher up the chain I was getting so I couldn't let it get to me and I just plodded along whilst still seeing my rhematologist with no diagnosis... I managed to become a kitchen manager aswell as a bar supervisor and I was over the moon coz at the same time my pub manager decided to start training me up to do his job too, I was working crazy hours doing 7 days a week and the pub had pretty much become my home, the staff loved me and a few even did deep clean night shifts for me unpaid, I would buy them pizza hut during the shift and also paid for a night out with them out my own money, they said they had alot of respect for me and I was the best manager they had ever had, I was so proud of myself and so happy with the direction I was headed, on my way to fulfilling my dreams. In 2015 (30 years old) I had still not been officially diagnosed and the pain in my hip had become horrendous I could barely walk, my rhematologist decided to 'put me on hold' and reffered me to a hip specialist... straight away he diagnosed me with FAI (femoroacetabular impingement) where I had extra bone on both the ball joint and where it goes into on my hip plus a labral tear and cyst... I ended up having an operation which eased the pain but not fully, around this time all my other joint pains had also been getting worse so I made the tough decision into stepping down at work and went back to being a kitchen assistant, I was absoloutely gutted but I was struggling far too much and I had to do what was best for not only me but also my team, I was just deteriorating and I started to feel so tired constantly, I kept having more and more time off work and even though they did everything they could for me at work giving me risk assessments and adjustments to help me whilst working plus lighter duties etc, I knew then I had to make another career change into something more suitable where I wasn't on my feet all the time and it wasn't so hands on... I got myself a job working in a call centre (completely out of my comfort zone) I still work now and have done for 2 years... my rhematologist last year (november 2017) said he would see me again so I went back to one appointment just to be told he was discharging me as he could do no more for me and that he would refer me to neurologist to see if they can help me... in my discharge letter from the rhematologist he put I had fibromyalgia... I was confused as I had never heard of this word before and he had not mentioned anything to me at the appointment... I took the letter to my GP who wrote a nice angry letter to him asking him to explain, all I got back was an apology for the confusion and a confirmation that I did have fibromyalgia... simce my diagnosis last year I have done my own research into it and joined any fibro group I could on fb, I have also deteriorated massively and have so many new symptoms too, I would say fibro fog I found is just awful (I was driving out of a car park once and suddenly forgot how to even drive) I'm not able to drive anymore as not only is the pain bad but with the fibro fog I would hate to cause an accident so gave my car up instead, it has been so much to get my head around and actually accept I have fibromyalgia, accept that there is no cure and I won't be able to be the person I have always been... I was once my nephews fun adventurous aunty who he could climb trees with, run around with, play football, ice skating, go on bike rides for hours and hours everything and anything... I can't do any of those things anymore and on more then a few occasions I have felt so down and devastated I've wondered what the point in being here anymore is all about.... The main reason I have kept going is my Nephews, I've always been the person to put others before myself and I now believe that my purpose in this world is to help others... whenever I seem to meet someone new it tends to be when they are at there lowest and in need, I become very close with them and help them in everyway possible, they get back on there feet, gain confidence and just become a better version of themselves... I find that as this happens we then drift apart and suddenly someone new pops up again and then the process repeats, I don't really have any friends and haven't done since I was little but I have always had that 'one close person' to me that I spend most my time and energy on, that person changes all the time as and when someone else is in need etc as I explained above.... I once found it strange and saw the negative side thinking I wasn't good enough to have a friend etc but I opened my eyes to it once and realised that it must happen for a reason and that actually without me who knows what would have happend to those people I've met along the way, I've stopped quite a few people from taking their own lives before so I kinda see myself as a bit of a saint now... going off subject a little there but hey ho I love writing essays hahaa I keep myself positive by thinking about my nephew and how I can be a good role model for him (for both nephews now I have a new little bundle of joy in my life) I've already been the fun adventurous aunty and now as he is getting older and is also in need due to having mental health issues I think of ways I can help guide and support him without running around and climbing trees... instead we bond over video games and I provide him with wisdom and listen to everything he has to say so he knows I'm there for him and he can always talk to me if he needs to no matter what... watching my nephews together (11 year old and 2 month old) brings me so much joy too and I'm looking forward to watching my nephews grow up and can imagine the eldest teaching the youngest everything I have taught him and doing all the things we used to do together... I look forward in seeing how their lives turn out, if they get married, will they go to university or travel around the world...
Luke Cartwright My short story.......I remember standing outside a shop frozen,in a state and feeling anxious, I did not understand at the time but it was a panic attack. I had been out the night before on some mad booze bender weekend, I was drinking alot, I knew something wasn't right and my body was hurting aswell as my head. This was not because of the hangover but this was the very reason I drank so much. I was self medicating. Alcohol numbed my pain. I worked as a care assistant, the pay was rubbish but the job was rewarding. I enjoyed caring for others but did not care for myself that much. Aswell as alcohol I smoked about 30 pre rolled spliffs of cannabis daily. Again, looking back I was self medicating! It was hard to get through the shifts but with the help of the cannabis during my breaks I coped. I would also pop a few valium here n there which I brought on the black market. My body felt like I had been hit by a truck but much more than that,there really isnt words that can describe the pain,it is very intense and widespread. Muscle aches like you wouldn't believe,joints as stiff as wooden boards,red hot pins poking all over your body and electric shocks jumping through your arms and back. Aswell as the pains there comes anxiety, depression, sensitivity to hot and cold, ibs, brain fog, sweats, lethargy and chronic fatigue just to name a few. Enough was enough and I finally booked an appointment with a doctor who sent me for some scans and gave me some pills. This was just the start...oh my god, I lost count of how many blood tests,scans and referrals I had. Suprise suprise bloods all ok?...can the doctors find anything wrong? No!...Oh actually,wait a minute one blood test was not good...My liver function test was positive...due to all the alcohol and drug abuse, I had contracted Hepatitis C. Jeez,what a dirty thing to have,I felt very low with this news. Another dark time in my life. I got pneumonia and was hospitalized. My body was had it. I was bed ridden and lost my job. Sometime later I began liver treatment, swallowing huge pills and jabbing myself with the drug interferon. The side effects were harsh and I lost my hair all over aswell as my mind! Those were dark times. After six months treatment my liver was ok, I had cleared the blood born virus. I had to do another six months treatment to make sure, didnt miss one pill or one jab and I was finally discharged. My body was still a wreck,more so now and the fatigue,depression really kicked in, I was signed off from work and did not touch alcohol or drugs...but God did I need something, I was prescribed pain killers and sent for more tests and referrals..liver all fine so why do I still have all of these symptoms? Eventually I got diagnosed with the condition fibromyalgia. Everything made sense and it was a huge relief to get the diagnosis, sounds strange but it was a relief! Now I can 'deal' with things was my thinking! The rheumatologist that I saw that day was really nice and understanding,he handed me a booklet to read and I went away in shock, relieved but in shock. I didn't realize that men could get fibromyalgia aswell as women! It was a strange feeling and my life changed in so many ways...I didn't 'deal' with it. I hit the drugs again, harder than before. I stopped going out, lost the plot, overdosed, got pneumonia again, got really poorly mentally and physically and became very depressed and withdrawn. On a bad flare I could be bed ridden for a month, I grew my hair really long,didn't wash and continued to abuse the meds and drugs, morphine alone wouldn't touch the pain,it had to be cocktails of everything, opiate based pain killers, pregabalin, valium etc washed down with cider. Looking back I had given up, for over two years I slept and sat in my bed and my chair, I became a mess. I felt so alone, I found myself again in a very dark place,this debilitating illness/condition had consumed me and swallowed me up whole!!! That is how it felt,it was way worse than drug addiction but I had to also 'deal' with that too. If you was to analyse my whole life there could have been many triggers for fibro. Childhood trauma,abuse,homelessness etc...I guess I have been both a victim and an abuser myself in a way. My partner was raped in front of me one night. This troubled me greatly. Time stood still and I don't think I ever got over that, unfortunately the mother of my daughter is no longer with us,God rest her soul. I got involved with gangs in the early 1990s and things happened that I rather forget and had put away in that pandoras box until I wrote this short part of my life...The pain/guilt I still feel from all the bad things that I did and the horrible things that happened to me still haunts me if I let it. 7 times in rehabilitation, psychiatric wards, suicide attempts, I could go on, ptsd, there are plenty of triggers right there. Or it could of been as a result of the liver treatment . We will never know exactly what triggered fibromyalgia, if anything! I am lucky to be alive,I do know that. Many of my friends/associates are not so lucky. I guess that's what it all comes down to!!! We have life. We are fighters. My daughter keeps me going but in my negative dark moments my higher power keeps me strong!..One day I stumbled upon this group online and joined...wow...my life started to change!!! I stopped using drugs and alcohol, started to post in the group and built up a great relationship with my new doctor, attended the pain clinic, accepted the condition 'fibromyalgia', understood it and changed my mindset...challenged my negative thinking,took care of myself more and I paced myself and at some stages pushed myself! I started to get active,country walks,cycle rides and gardening! I have got my social life back,enjoy diy and cooking, a healthy balanced diet is essential for ibs so it is great to have cooking as a hobby and Ive managed to eliminate alot of stress from my life which is a must! Stress always brings on a fibro flare...The brain fog is just so bad its hillarious, I have to laugh it off now..nobody would understand unless they suffered themselves from fibro, the same can be said for the rest of the symptoms, anybody can read the seven pages of the ridiculously long list of symptoms but only us here can identify and truly understand them. Smile, be happy, hugs not drugs,meditate or find a God,any God...relaxation and meditation does wonders for the soul!!! Happy days fibro warriors,this is the beginning not the end,our minds are more powerful than our bodies!!! Now I feel like the phoenix rising through the ashes, I dont know where I would be without this group, thankyou ALL of you! ❤️🙂
A poem by Mim Clayton,
A poem ive written, about my myself
To explain my life, my battles with health.
I wake each day, in the same old pain,
Knowing ill never be "normal" again.
A good amount of energy, whats that?!
Ive more chance of pulling a rabbit from a hat.
To people who know not, its hard to explain,
What its like to exist, with so much pain.
You can't get away, theres nowhere to run
As you watch your friends living life, having fun.
Can you imagine, waking one day,
And your previous life has been taken away.
Every day becomes a huge fight,
You decide its better to just stay out of sight.
And into a deep depression I dive,
Wondering the point of being alive.
The torment I go through in my head,
Knowing to be pain free, I'd need to be dead.
The thing is though, I'm not one to give in.
I won't let the fibro or depression win.
My battle ill keep fighting day by day.
But please take in, what I've had to say.
To people with chronic pain, be kind.
You have no idea what its like to be in their mind.