Do you feel isolated?: Although I live... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Do you feel isolated?

kasp767982 profile image
8 Replies

Although I live with my partner, I often feel isolated because I rarely go out. I don't drive & only ever venture out for a reason. I get picked up & dropped off at home for hospital, GP visits etc.

It's a good ob that I like my own company, but sometimes it would be so nice to meet up with someone for tea & a chat, someone that understands how this wretched condition effects me, withou constantly having to explain myself :) I am sure I'm not the only person that feels like this?

J x

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kasp767982 profile image
kasp767982
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8 Replies
tracey1973 profile image
tracey1973

J, i know how you feel, i can drive but feel so ill n tired its not always safe for me to do so :(

where in the country are you if you don't mind me asking?

Tracey x

hi kasp yes i feel the same some times , even though i can drive i still feel isolated, there are days that i really dont wish to go out just need time on my own, my fella is just gr8 does alot for me as i can not do many things for my self... some times i go to my bedroom or sit on the landing in my reclinger chair watching to world go by......

i can not go into a shop that has too many people init as feel panicky and need to get home where i feel safe....

i just wish that i did not have this condition as it has affected my life so much ... dont go to pubs or any thing like that any more seem to be house person all the time ...

soft hugs pammy.:)

Tiggerooo profile image
Tiggerooo

Hi J, Welcome to you J. You certainly are not alone in feeling isolated. I feel pretty sure without reading all the blogs (a newby to the site myself although had ME.CFS & Fibromyalgia since 2003, plus other chronic conditions) that most, if not all sufferers will feel varying degrees of isolation, even if they are surrounded by family, and its probably because the people around them may not understand the condition if it hasnt been explained to them, although how many local GP's across the country are able to explain the condition or even understand it themselves; and the great limitations it places. It is a horrid condition and turns your life on its head. I know it changed mine completely and causes difficulty when the closest people to you refuse to try to understand, or read any information on it in a bid to try and understand at least a little of it. I do so wish that there was more research in the United Kingdom that would go some way to making the condition/illness known generally, possibly by running in the tabloids, for example, different sufferers issues and difficulties experienced with it and how it has affected their life. There seems so many people out there that have no idea what it is and there are so many sufferers today. I would be really interested to hear your thoughts in it J, and what your experiences are of it so far? Dont worry if you dont want to go into details. I just recently found this site and thought 'Wow' at last finding a site which is for Fibro sufferers to chat together and learn about each others experiences and what common denominators there are in the illness, we may get a bit more of a handle on this.

I do hope you have had a better day and anytime you want a chat I am usually propped up beside my laptop most of the time, although do have carers so during their shifts my concentration level isnt as high for computing.

Anyone is welcome to drop me a line as I would love to hear from any of my fellow sufferers, and wish you, J, and all others a peaceful night.

Sleep well, Tiggerooo

kasp767982 profile image
kasp767982

I live in Wiltshire Tracey & I don't mind saying at all :)

Hi Pammy, yes I feel the same when going into shops, although I don't go in them very often anymore. When I do, I always check out the exits first, it's silly but I hate the feeling of not being incontrol :/

I think there is a fair bit of research going on to find out more about Fibromyalgia, I used to work at a Rheumatology Research hospital before I was medically retired, but how many of them there are dotted around the country I'm not sure. The hospital I am with now (Royal Mineral Hospital in Bath) is fantastic & although it is a teaching hospital, I don't think that they do thier own research on site.

Off for some sleep, so will chat soon!

Oh, my name is Jane :) x

No that is so true i have good friends etc and family but it would be nice to br with someone who has thios and really understands love to you diddle x

kasp767982 profile image
kasp767982

Thank you Christine, I have looked on there but because I don't drive they are difficult to get too the groups. Thank you for trying to help though it is greatly appreciated. If I know of more people in my area I would be more than happy to hold a weekly meet in my own home.

ladyship profile image
ladyship

Hi J,

I feel that way too. Not only do i have firbo i also have had three strokes, breast cancer, brain tumor which i have had removed all in the last 13yrs.this has happened to me.It was the last straw being diagnosed with Fribo. I would like a group to go to and generally chat have questions answered.My O.T. said i now cannot go out alone, even if i use my scooter. Still i have a lot to be thankful for as i have a lovely family.They live their life's but if me or my husband need help they are there no matter what.We all have good sense of humour.I have a wonderful Husband that drives me any where i need to go to.Always asks if i want to go out.I cannot ask for more than that can i.The tiredness is a terrible thing that we all have to cope with.The burning gets me to.Now i have got that all off my chest.I wish you all a "Happy New Year". M.x

Ditto :o

I am not too mobile either so spend a lot of time in my room on the laptop playing games or mooching about here which has been a Godsend for me finding this site :)

However it gets lonely too and sometimes feels as if my hubby just feeds me and that's it and when I approach him about it he replies with 'I love you sooooooo much babe what would you like me to do? ' Men !? well how about joining me for morning coffee while you read the paper? ............ 'Aw but I like my mornings in the kitchen with the radio and my paper :o ' I can't sit in there as its too draughty and sets off flare-ups :(

He is good bless him but there are times when I could bang his head with something or give him a shake so he could see how lonely I am or the fact that cabin fever has set in meaning gosh get me outta this house syndrome LOL

I use skype to message and video call friends and family which helps me a lot you could try that but you may have to talk friends into installing the program, its all free :) well majority of its services are. (hope I haven't broke any rules mentioning the company???)

:) xxxsianxxx :)

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