Hi all after recently joining this website I've been following many of your stories and am blown away by the love and warmth of the people here. I'm not usually one to share when things are bad, more of an advice seeking person but today I'm in a bad place and scared. I have like many of you a host of health problems, ME/CFs, Fibromyalgia (recently diagnosed) arthritis, back and neck and leg pain blah blah. Currently waiting to have a bone scan to see if hip replacement implant has moved, I have an Accolade implant which I gather can cause problems with approx. 5% of women (and of course I'm possibly one!!!). Ive had to leave my beloved job as a midwife after several years. finance are bad.... you all know the picture I'm sure.
But today I'm feeling so desolate, is this my life from now on I'm 51? The pain as you all know is relentless, I try to battle to stay positive but its exhausting. I find myself wondering if Id be better off not here, I feel so guilty because my beautiful 22 year old daughter has also been diagnosed with ME. My husband is wonderful but our intimate life is suffering badly. we have only been together for ten years and my God what a different person I am today to the one he met! It's hard for me to open up emotionally to anyone, years of practice, but today I need to reach out to the very people I know totally understand my pain. Thank you for listening.
Jo
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joannie1964
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It's not easy and I'm more of a listener than a sharer but sometimes just getting it out gives you a bit of a breather. Every now again I try my Pollyanna theory but it doesn't last long it occasionally helps.
it's nothing spectaclar just stupid things like oh it's raining today, at least my hayfever won't play up, i'm really tired but i don't need to go to work today, i've run out of chocolate but i've got ice cream. Doesn't always work because sometimes noting will.
Polyanna is an cloying kind film beloved of young girls. Starred Hayley Mills. She was a breathtakingly vomit inducing child who could always find ' something to be glad about' in every situation. It was my favourite film when I was 10
Hi Jo, i also used to work for the nhs on a very busy ward untill 2012. I was having pain in hips and low back half way through a shift and was struggling by the end of the day. I saw a specialist who said that i needed a hip replacement and when its done most of my back pain would go so feeling positive i agreed to have it done. BIG MISTAKE!! When i woke from the op I was in agony with my back and have been ever since. They fractured a vertabra both sides which has slipped and causing nerve pain around low back, upper thighs, hips and buttocks. Cant walk far, sit very long or stand for long periods and in chronic pain 24/7. When i saw a specialist about my pains he said the pain in my hips was coming from my back all along and there was no need to have the hip replacement in the first place. He was as angry as i was . The pain now is 20 times worse than before the op. So like you Jo i lost my job at 54. Would give anything to get my job back and carry on where i left off but i have to except that thats not going to happen. So welcome to this site which has helped me to know that im not on my own. X Lynne
Hi Lynne, gosh I'm so sorry to hear about your awful situation. No wonder you are angry. Don't want to be personal or pry but did you consider applying for ill health retirement from the NHS. I have just been awarded mine, and although not enough to live comfortably on it certainly helps. I also have had herniated discs in my lower back and had three steroid injections, the first helped but then I had a car crash which set it off again and further two did not help at all. At my osteopaths in Brighton they do this treatment called IDD therapy, which is not cheap by far but it did stop the lower back pain and awful sciatica I was having. Might be worth researching?
Its so awful isn't it when you study for your career to have it snatched away from you but I just could not do 13 hour shifts which were physically and mentally exhausting so had no choice really. thank you for taking the time to reply to me.
Hi Jo thanks for the info on IDD therapy i will definitely look into it. I was also thinking of perchasing an altrasound machine but would like other peoples thoughts/ experience on this as reluctant to waste more money. I did get ill health retirement but its a measly amount but luckly my lovely husband can afford to keep me as im pretty cheap to run lol. We just have to plod on somehow but at times its easier said than done. Keep in touch Jo and i will let you know if i find something that might help. X
Hi it my first day on the forum a friend has told me about this forum. I was sorry to hear about all your problems but u r worth a lot to your family friends please don't think u would better off nor hear. I have been where u have been. There is a light at the end of the tunnel the light is a bit blurred at the moment but will it will brighten up. Just try and keep positive u will get there.....take care ....
Hi Tads21, thank you for your reply to me. Today is a better day emotionally, the sunshine helps if that doesn't sound too superficial? I hate those dark and gloomy days. I'm seeing my doctor tomorrow so ask him to refer me to the pain clinic. I need something different to what I'm on, think Ive become used to the meds.
I have just been refered to a pain clini,c I saw a consultant the same day I replied to your post . I have a hearing loss and the wonderful consultant said they could not look at me and write at the same time! I bit my lip and I do understand they have time limits but took them longer to get the right info out of me.. The only thing she could could offer was a psychology approach.. I did point out I don't just sit on the sofa and cry I do things to keep my mind occupied I hurt so I might as well enjoy or try and enjoy things I potter in the garden I do X stitch and I love cooking and I have my faith full friend my dog. . They said it would take about a month to come through I will be interested to see what they have to offer. We will have to swop stories and see what they offer. In the mean time hang in there have a laugh at my lousy spelling !! Take great care .. and no the sun shining helps.. it is like problems are always worse at 3 am in the morning .. It is raining here today I wanted to sort out my gooseberry bush it has mildew. Take care and a big hug xx
Hi Tads 21 sorry for delay. I don't understand why all pain clinic can offer is counselling? Could they not organise an effective pain strategy for you? Honestly I hate that all us sufferers are at the mercy of different approaches from different doctors. Just seems to be pot luck if one is lucky enough to get someone good! Hang in there hun.
I think when get to the counselling stage I think u have reached the end of the road!!!!I have tried most pain killers and the ones I have not tried I cannot due my health problems. I am on high dose steroids for a long time and am on them for life. They have wrecked my bones I have just got out of plaster for a broken foot it took almost 6 months to heal. I have a very good group of supportive friends and a brilliant best friend. I try not to whinge about the pain to much but there are times u cannot not help it. I try not to let rule my life. I potter in the garden do a bit cooking etc..I hurt so it does not matter if I sit on the sofa or go do something. .AS I pointed out to this consultant the other day..They said something about mindfulness? Never heard of it so maybe I will find out when I go to the pain clinic I will try anything a try. I try to keep as positive as I can I have been in a lot of pain for a number of years. I have tried to adapt my life. I had my contract at work terminated I tried to go back to work 3 times doing a different job but it did not work. So I changed my life to do the things I can do ..I have had to accept help from carers. But I have a fairly good life I cannot complain to much. I have good days and bad days like everyone else....so take care u can do it just takes time..😎xx
Tads21 I am in awe at your strength and positivity! Mindfulness I understand it is a way to quieten the mind, to become aware of your breathing and to focus on it in a way it detracts from pain or anxiety. It's kind of like listening to your body. It's quite powerful I think but takes practice. What have you got to lose?
Ha ha I have no hope then !!! My brain is never quiet..when I go out with friends I often lose then as I zoom about in my electric wheelchair as I often think yes they laugh as well me think !!! and forget I can go faster than them walking...They have often asked shop assistance " have u seen a lady in a electric wheelchair I have lost her " ..too I think she went that way! ! I will give it a bash. .I was talking to my best friend laughing about what they will make of me ..If it involves controlling breathing that is a no hope as I have very knackered lungs..The consultant said it takes about a month then they send u a questionaire and they decide from there I think if they r going to see u or write u off I don't think I will get past the questionnaire stage as I know 2 people with same condition as I have in different areas who were written off so we will see what happens ..I Will keep u posted xx 😊
I was forced out of teaching and no medic had the courage to tell me that I wouldn't be able to return. The uncomprehending frustration drove me to desperate lengths and I wasted nearly five years before being able to 'move on'. Accepting counselling was the first step out of the abyss, and I hope it might help others. Hugs!
Jo I can relate completely to the feelings you are expressing. I've got chronic pain, daughter with ME, loving husband, totally different person from a few years ago and of course the wondering if I can keep going.
You wrote the post 2 days ago. I'm wondering if things are a bit different today. Not the pain or the whole situation but your ability to stay a bit positive and cope a bit. I've found that these emotions change from day to day, sometimes from minute to minute.
I've found that after letting waves of despair wash over me for a certain time it becomes impossible to get back without what I call meltdown.
Does this ring any bells ?
I'm in more pain today than for a long time, I've got to drive to an appointment which got increase my pain to unmanageable levels but somehow I'm not getting too hopeless about it. Maybe because I woke up this morning and said ' nope, today I will not let myself think about ending it ' .
Of course other days it just creeps up on me.
I know I couldn't do that to my daughter who relies on me to look after her boys when she is too exhausted, cook a meal once a week and hang up her washing every day . She lives next door. In a better life she would be helping me wish the jobs I can't manage or I'd be doing more for her. We got I'll around the same time. Bad timing.
It really is a day at a time Jo don't you think ?
I hope you get support and encouragement from this site. I know I do.
Hi deejames thank you for replying to me. I've had some lovely encouraging responses to my post which has helped. You are wonderful to be able to help your poor daughter, I've wondered myself that as my daughter has it too if there is some genetic link. My girl was poorly all through her a levels and uni but managed somehow to get through it with a 2:1 I am so proud of her. In answer to your question yes today although still wracked with pain I feel brighter in m y head. Per haps its because the sun is shining and everything is not so dark and gloomy.... who knows. What I do know and hate about this wretched illness is the unpredictability of it all, how I can feel so differently from hour to hour! Is it like that for you too? Bless my husband but some months ago, and knowing how much I love my garden and nature in general, he wanted to lift my spirits so bought us two tickets to the Chelsea Flower show this Saturday coming. I am looking forward to it but mostly dreading it as its such a big day, so much walking, but He felt it would give me a lift. I don't think he realised what a large scale day it is. But I will go because I need to get away from this house, my home I love but feels like a prison mostly these days.
A friend came to see me yesterday, so I made an extra effort to do my hair, put some nice clothes on and my make up. she arrived and said gosh you look so healthy and well, I gather your pain has gone now then? If only, there is no awareness of this condition...only amongst the sufferers so that is why this website is a godsend and I'm thankful I found it.
I can relate to so many of the posts on here.At 53 I have had my contract terminated due to my ongoing health problems.I had been off work since Nov 2014 and with no idea how long if ever it is going to get any better we agreed to terminate my contract.I too worry about the future and if my working life is now over.Having the support of the people on this forum helps as you can chat to those people who are suffering from a similar situation and who truly understand how difficult life is.Gentle hugs to you all x
poppy62, sorry to also hear about your situation, its awful isn't it. I want to work I hate being at home all day and on a good day I think yeah I can do this....then the bad days come and I wonder how i 'd ever get through another days work! I've never been unemployed since I started work aged 16, I am now 51 so it's real shock to the system. I have been able to claim ESa contributions based but this ends in September so god knows what will happen then. I wonder about claiming PIP but I read about the dreadful way claimants are treated and the stress of the forms so keep delaying it. Not like me at all, or the old me who would tackle anything head on! I do hope your situation improves but for now guess we all on here have each other.
Jo apply for pip the forms were not too bad just tell them about your worst day ever . I looked at the ESA forms and they seem really difficult to fill in 😁
Hi Jo, and everyone, I have been reading your posts, I feel for all of you and like you all find this forum and the other ones I am on very valuable, often you guys know and understand more than the doctors do and for us that is important. To get a doctor who understands is rare but I have a good doctor and he and I get on really well and he I think understands what I am going through. I am 52, I have never been able to work because of my disabilities, I had encephalitis when I was 6 years old which left me totally blind and in a wheelchair and I have other health problems too, so circumstances are very different but I feel your frustration, anger, it has got to be really hard for you all, I have no idea what it is like to be working and then to not be able to work, I cannot understand how frustrating, demoralising, that must make you all feel! I have had many friends who over the years have become disabled through an illness and I am amazed how you all cope so well, for me I have been like this for so long that I can't remember what it was like to be "normal!" I don't know any different. To be in constant pain is really hard, especially when the pain relief you have been given doesn't work properly and there is little or no support from the doctors. It has taken me over 8 or 9 months to convince my doctor that I was in pain, he kept saying it was my nerves. I am still in a lot of pain but it is the swelling and nerve pain after the burn which is still healing. But Jo, you sound much more possitive since your original post, I am glad as to give up is too easy, I felt like that last year when I had several bouts of cellulitis and ended up in hospital on i.v. antibiotics, , followed by an accident when I dropped a pan of boiling water on my foot and was left to get on with it by the care company where I live. They completely left me to get on with it and didn't even call an ambulance. but I have found it hard but through constant emails to my doctor and the nurses who have been dressing my wounds, I have finally got the help I need. It is a struggle at times, but with the support of you guys and my friends and family and counsellor, I have pulled through it. I think it is important for us to reach out and help one another, we all have problems and to share them and pass on what we know is important as we can all help one another. When you go for appointments, I find it easier to write it out, I went to see a pain doctor last Monday, but because I didn't know him and he me, I didn't tell him all I needed to so today, after suffering with pain all week, phoned the pain clinic, got the email address and wrote a letter to the doctor, it is better as I can express myself better in writing.
As for esa and pip, as you cannot work, I assume they will keep you on esa and applying for pip isn't as bad as it seems, if you get somebody experienced to help you fill in the forms, it makes it much less of an ordeal and they would know how to word the answers to the questions. With what you have wrong with you, I see no reason why you wouldn't get pip so go for it. In my case, one of my support workers from headway filled in my application form for pip, I was on dla before, so he knew what was required. I am not sure where you are but if you can get to your local cab office, they will be able to help you.
Just know everyone, there is loads of support and help out there, and with our help and advice, it will make it easier for all of us to cope and live our lives as best we can.
Jo good to hear from you and take care one and all. Adrien in sunny Devon, p.s. it is nearly 5 in the morning and I can hear the birds singing, I have been awake all night, the pain keeps me up, but it is nice to hear the birds, it makes me feel very happy and know that there is always somebody worse off than yourself.
I got PIP awarded last week at higher rate for both components until Oct 2017.If you do decide to go for it there is group called Fightback on FB that has lots of useful help and advice and also the Benefits and Work website.I wish you good luck if you do go for it as the experience of applying seems to vary from one area to the next x
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