Bit of a blog?

[Maggiet]

I've always shied away from blogging as I may just end up having a constant moan about things - so here goes! Nearly two years ago I started with tingling in my feet - like my socks were scrunched up and now - well, I have chronic pain in my feet and legs and hands. Shooting nerve pain in my legs and arms and such sensitivity in my skin that I never thought was possible - drying after a shower or using paper towels after hand washing sets those nerve endings a-jangling! The pain cannot be seen and apart from limping when I walk and the odd wince or three no-one in the outside world knows that I am in constant pain/discomfort. I hold down a job - part-time - and that's so I can get some rest inbetween, though I must admit that the words 'pace yourself' is like anathema to me! Been waiting for a nerve biopsy since March - as the the hospital up here in Scotland that does the biopsy can't get their act together with the hospital in London that examines it. Put on Duloxetine by the pain clinic and dose doubled as the depression came back - wallop - as I had to come off the Citalopram. I feel that I want to shout and tell the world that I bloody well HURT like crazy and I'm fed up with it. There, I did warn you that it would turn into a moan - sorry everyone. Anyway, moan over, but just wondered if anyone else on here felt like me or if I was just having a pooh of a day? Love to everyone and happy Sunday x x

[JC69]

Hi Maggiet , you are DEFINATELY NOT THE ONLY ONE who feels like this . If you read my blog 'Vicious Circle ....' that I left yesterday you'll see that I've pretty much said the same as you . There are times when all i want is someone to hold me and say it's ok not to cope somedays. You my well just be having a poo day but you're in pain all the time which is a poo situation and it'd be very unusual and strange not to or a series of poo days. Ive also been - as im sure a lot of us on here have - waiting to find a dignosis - cos I know for me the not knowing made me feel so very depressed cos I didn't know what to battle.

Hang in there and keep moaning if you have to , take care x Jane

[Maggiet in reply to JC69]

Hi Jane

Thank you very much for your reply - I had read your blog post and it made me realise just how many of us there are that are in constant pain. I have been off to renew my Blus Badge today and as the rules have changed I will consider myself 'lucky' to get one. Like you, I get really depressed and frustrated at the lack of urgency my the NHS to find out the cause of the pain. I know that they are very busy but, for heaven's sake, it surely can't take 7 months to sort out a nerv biopsy! I know there is no cure if it does come back as small fibre neuropathy but at least it will be proof of what I have rather than a 'probable' diagnosis from the docs! But, hey ho, today is another day and as I did nothing yesterday to recover from Saturday's trip to Asda at least the pain has subsided a wee bit. Thanks again, Maggie x x

[colboy]

Hi Maggiet you are not on your own I am in cnstant pain which I take pain medication for it my pain is connected with my spine and joints they have said it'e ostoartheritus I think I have spelt that wrong but you know what I mean it started three years ago with pain in my joints which I used to take arthrotec this was ok and kept pain in check it was still there but ok . Back in 1970 I worked as a baker at Mothers Pride when I pulled my spine causing me to have no use in my leg's i had no feeling below the waist which caused me to lie flat in a plaster jacket for 6 months, I finally got the use back and went on to get a light job to get my pride back this I did untill three years ago when I had heart trouble which caused me to go to Hospital for stents then after I was given the all clear and I had to change my life around it was very frightening but due to that I had to change my medication. My back and legs knees and joints were very painful before the heart attack but after It progress to get more and more painful, I can't walk any great distance and when I go anywhere I have to take medication with me just in case I never have a day when I can say I have not had any pain I take Zomorph M/R Capsules 100mgs twice a day and Paracetamal three times a day I also take Morphine Sulphate Oral Solution 10.- 30mls as I need it this is how I cope I have accepted that it will only get worst but there are a lot of people worse of than me. I know I am very lucky I have a Fantastic Doctor who look's after me he understands my condition and my wife and family are my rock's they have to put up with my bad day's without question I also love having my Grandchildren because they take my mind off it. You are not alone and paceing is the way I cope I used to do all my own decorating I still paint but it may take a month but I do it at my own pace. Take Care and chin up just think you are alive and take your time with everything you do.

[Maggiet in reply to colboy]

Thanks for your reply Colboy - your pain and the problems you have had sound so horrendous. I agree that pacing is the only way - it's just that I am SO bad at it! I think - woohey, I have a good day, let's get things done - only to have to sit with my feet up for the next 24 hours! My hubby is a wonder for accepting things as I am and my family are brilliant too. Though it did hurt when my grand-daughter said 'come and run with me Grandma' and my daughter-in-law said 'Grandma can't run, I'm afraid'. Ouch! Though she can sit on my knee while we read stories and I can sit with her and do puzzles and painting so all is not lost. Thank you for your wise words. Maggie x

[Hidden]

My family have given me a moaning allowance, because as they say they all know I am in pain so why keep mentioning it as they can't do anything about it, I can't do anything about it, and the docs can't either.

I get aches and pains all over the place and nothing seems to set them off. Its all part of my body trying to slow me down so the injured part can heal. Unfortunately the pain messages have not switched off so my body is screaming out that there is an injury even though that injury has been addressed and should not be causing as much pain as I have.

I get sick of all the monitoring of what I do and balancing my day so I don't overtire any sets of muscles which might just decide to cause pain because they can.

I get sick of having to hold back on the few good days I have because if I don't I'll be worse off for the next few days.

I do enjoy being creative and exploring new crafts. I do enjoy reading and gardening (as long as I do it my way) I do enjoy the odd computer game and having coffee with friends. I do enjoy being with my family even if I can't join in the activity. I do enjoy short walks in the countryside (which is all around me thankfully) I do enjoy driving the 1/2 hour I'm allowed a day - will take me ages to run away!

I really like the meditation and mindfulness I practice - they take me somewhere else for a while and best of all I like finding new ways to trick my body into accepting normal levels of activity and movement.

And when I've reached a goal, I treat myself, could be a bar of chocolate or setting aside some time to bake a cake. Nothing fancy.

Oh, my moaning allowance is 3 moans a week.

[Maggiet]

I think I need a moaning allowance - what a wonderful idea! I'm sure my hubby is SO fed up of hearing 'I hurt' though he never says anything, bless him. Like you, I feel the frustration of not being ble to do what I want - exercise wise that is. I am a keen gardener, but after an hour (if I'm lucky), that's it and I'm back in the house with feet up. We moved from England to here in the country in Scotland for a more peaceful life enjoying what we wanted to do. Sadly, my thoughts of long walks in the wonderful countryside up here and hours working in my garden have been put to one side and I think that it is this that I find the most frustrating. A bit of pain relief wouldn't go amiss, please! I try to set small goals and then feel good when I (finally) reach them - i's just that I am not a very patient patient I'm afraid!! Thank you for replying and take care. Maggie x

[hatingmypain]

While I thibk that a moaning allowance is a good thing for family & friends, afterall who wants to be around a moaning mninnie 24/7 sometimes it feels better to rant a bit. I'm in a very similar position to so many of us here - I have arthritis in the spine and my hips and knees are starting too, and the medication I take doesn't work, it only keeps me mobile. ( take 2 - 3 dihydrocodeine and 1 oxycodone 2/3 times pd)

If you - or anyone - wants to rant I think to a certain extent it does us good. I can almost feel all my shoulder and back muscles tightening up if I'm feeling angry/fraustrated/upset about how things are going on a specific day I do write in a diary or use the notepad function on my computer to do it just to let it out!

Please don't feel like you have to keep it all in, we all of us have days when it feels like it's me against the world, and everyone's fed up with me so I can't say any more about the pain I have every day ( or most days, whichever applies) use this site, and talk to us.

Hope you are feeling a little better today Maggie, and all who are reading this.

Squishy but soft hug for you if you want it x

[paigie]

I like your rationed "Moan Allowance" : will try it ! My biggest moan, apart from whinging about the pain, is leaving so many things unfinished, because of exhaustion or just general tiredness - work, housework, garden tidying, emailing . . . the list is endless. HMRC are

always bullying me because my tax returns are late. These days I don't earn enough to pay

income tax, but they make no allowances for semi-disabled people who have no spare time

and who can't afford to pay an accountant. A lot of my earnings go on "alternative" remedies + gizmos -- no free prescriptions for them.

Paigie