Just needed to have a bit of a moan to all that understand. I'm totally sleep depraved, am having a really bad spout of pain, started last Tuesday after a week of reprieve, actually thought that it may be gone, but it came back with a vengeance and more painful. Started having spasms in my sides, which is quite worrying.
Got a car a few weeks ago which has been a lifeline for both me and my daughter, who has chronic back pain. Only thing is that it is playing havoc with my hands, but it's a matter of the best of two evils!!
Keep trying to do everything as normal as it's just me and my kids and i'm so used to being fiercely independent.
I'm so tired, frustrated and sick of being unable to do the simplest of things at times. I'm also sick to my back teeth of incompetent, rude and dismissive doctors. I'm currently on ESA support group for another reason which does not state an end period!! so am waiting for the letter to drop that it's finished and then another battle will ensue.
I'm also so frustrated that at times I can't be there as much as I would like to help my daughter when she is in a lot of pain. I empathise with so many on this forum and often think that my problems are nothing compared to some others, but I suppose it's al relative and i'm just at a low point at the moment with no positive conclusion in sight. Sorry for the long ramble but thankyou to anyone who reads this and knows how I feel.
Moan over!! Karen xx
Ooh, by the way, am on pregabalin, tramadol and paracetamol. Plus omeprazole!!
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kmc-cudsleepforaweek
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So sorry to read that you are feeling so rough. I think it is worse when you have had a good period and you think "at last it is getting better" then wham the pain hits you twice as bad as before. We can all sympathise here as I am sure we have all worn the T shirt. Glad that you have managed to get a car as it will give you so much more freedom but sorry to hear that it is affecting your hands. I don;t know in what way it is affecting your hands but I found since I had fibro that gripping the wheel was causing my hands to ache and as I don;t like driving in gloves i found the cold steering wheel caused my hands to literally go into spasm. A couple of years back I bought a Plush steering wheel cover and it has made such a difference as it is warm to the touch in winter and is also soft so cushions my poor fingers. It was only £8 but has made the world of difference. Hope that you don;t have the dreaded brown envelope dropping through your letter box any time soon as that is another T shirt both my husband and I have worn and no it wasn;t my favourite item of clothing. I know how it makes you feel worse when because of your illness you feel you can't support the ones you love through their illnesses as well as you would like I feel that way with my husband but I am sure that you are doing the best you can do in the circumstances so try not to beat yourself up too much about it. Hope by the time you read this you feel a bit brighter. Warm hugsx
Thankyou so much for your reply, I hope you're well today.
Thought i'd write a response before taking myself to bed in a cool dark place and try to sleep! As far as the car is concerned it's the gearstick that hurts (my fault really, should have got an automatic, in denial!!). Bought some hand supports (pink) which help but think I need something more robust.
Hopefully some sleep will put me in a less emotional state.
Warm hugs to you too. K x
Hi {{{{{ Karen }}}}}
It is ok to feel frustrated and angry at the loss of mobility or the fact you can't help as much. Your daughter's post the other day was a lovely post and I can understand how difficult it must be for both of you to want to help each other but cannot manage to do as much as you' d like.
I will have a look to get some links to info for you to see if you can get help somehow.
I just wanted you to know that we are here and listening and it is ok to have a moan
There's a huge bouquet of mixed fluffies for you and your daughter and I shall get back to you.
I have read your post with so much pain and sorrow for what you are having to endure at this time, it is my heartfelt wish that you can find some serenity in this sea of pain and sadness. I want you to know that you are just as important as every other member on this forum, and that your woes and pain are just as real, just as meaningful and just as worthy as anybody else's!
I also want to say to you that you are the most important person in the whole wide world to those in your life who love you without reservation!
Reading your post, you never mentioned if you received PIP or not? You just mentioned your ESA? So, just in case you are not claiming PIP, I have pasted you a link to the GOV.UK page called 'how to claim PIP', I want to wish you luck with this claim if you go for it?
I was wondering if there was one GP at your surgery who may be a little more responsive to you than the others? It can help a great deal if we can find a really good GP?
I am so grateful to have this forum in my life, it's like my own little sanctuary when living in world of scepticism of my condition. Q. Why is it a medically diagnosed condition but disbelieved by the majority of the medical profession? I think I have two more GP's I can explore at my medical centre before I have exhausted them all. I have though an understanding rheumy who has arranged for me to have some neurological testing, tomorrow as it happens!!
As far as PIP is concerned, I had a meeting with a welfare advisor who immediately said that as I can walk 20metres unaided I would be unsuccessful in a claim!!
At the moment my resilience has taken a bashing so am off to bed now (post tramadol and pregabalin) to see if I can get some rechargeable sleep!!
Thankyou so much again Ken, this site is invaluable to me.
I really do not know the answer to your question about medical staff disbelieving in Fibro? I have read so many posts from members who genuinely cannot get their GP's to understand how they are feeling! I count myself as fortunate, as I have a pretty good GP who understands me and will do anything to help me.
I would advise anybody in your position to keep searching as there has to be a doctor out there in your area that is good?
I can genuinely understand that all of this would get you down, and the getting back up is more difficult!
Take care
Ken x
Hi kmc
I went and looked on gov.uk and think the page of links it takes you to may be helpful to you. For example you can apply for equipment or adaptions to your home or apply for adult services assessment so they can assess your needs
So humbling that you remember my daughter, it is tough as I'm her mum and your kids look to you to make their pain go away not the other way around. Some things I now know will need to change in what I do for the kids and around the house. I also think that a conversation with my 17yr od son needs to take place as to severity of my condition (x-box keeps him oblivious to most going ons in our house). Thanks also for the info re: financial help. Definitely something I need to investigate more. We have just had to go cap in hand to their dad in order to get £55 for a back support for my daughter!!
Going for a sleep in a dark room and hope I wake in a better state of mind.
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