I have no immediate family, I'm an orphan. My husband & I moved areas 7 yrs ago and any friends have never eventuated 'cos of this darn illness. My husband understands the constraints fibro puts us under but he's busy winding up a business & trying to keep a roof over our heads.
This past year has left me housebound for the most part.
We live in an apartment building in a city area where most people work during the day or are away for long periods of time. EG: on our floor there are 8 apartments but only 2 are permanently occupied. We never see any of the other people here....some come & go for a weekend every 6-8 weeks. Others it's every 6 months.
Added to all that we are really struggling financially. Keeping a roof over our heads has been very hard.
How do others cope with the isolation 'cos I'm not coping right now.
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Jeniwren
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Hello Jeniwren. I've just read your message, I am also like you I have no parents because they have both died my brother lives in Greece with his wife and because I live on the Isle of Wight all my cousins live to far away from me! My husband who I have been married too for a short while is now living and working in London and I see him every other week. I have now lost my job and like you we have financial problems and there is no one to help us and all my friends live too far away! I have no friends my age group here I just spend my time going out for walks but not too far because of my Fibro and when I stay indoors I read or go on the computer or watch Dvds... Maybe get yourself a pen friend like I have that will give you someone to write too? Hope by reading my letter you will see that you are not alone. And I have given you a few ideas of what you could do! Also you could take up a hobby or join a group of something! Where about's do you live? Take Care Aisha x
Hi there, Mmm I understand where you are coming from , my OH works my son is at school or up in his room with his guitar , I have fibro and arthritis so am housebound for weeks at a time in the bad weather.... I do have one friend who we try so see each other once a week but as she has now developed arthritis that is getting a little tricky... I volunteer on here so that takes up as much of my day as I can give ... A new hobby sounds like a great idea, or is there a fibro group near where you live...
It is difficult, but with the internet available it's possible to find solutions.
You could contact your local Social Services to ask what's available in the way of clubs for disabled people, but these days, most clubs and societies make their facilities suitable for disabled access, so you could choose anything you fancy and go for it.
If you have no transport, someone will usually be only too happy to offer a lift.
I'm in much the same situation as yourself, I live in a small apartment in a large city, but am lucky in that I can still walk reasonably well, so I do some voluntary work, where I meet loads of nice people.
One of our volunteers is severely disabled, and wheelchair bound, but as we only sit and answer phones, he manages better than most of us. We have a small lift which gets him up to our ops room, and a 'disabled' toilet facility, so he's fine. We have a great laugh as well as doing our work, and I think this is one of the best ways of meeting other sociable people, many of whom have disadvantages too.
Our local library is always asking for people who will do 'story time' for young children, so if you like kiddies, that's another good thing to go for. You'll meet loads of folk, library staff and members of the public, and the work is not at all strenuous.
Do have a good search round on the 'net for something that takes your fancy, and I hope you manage to find something interesting, because social isolation is so depressing!
Sorry you are feeling the way you do at the moment. Isolation is a feeling I expect most would agree we all have experienced living with Fibro at some point and we understand.
I wonder if there is a support group near you, please click on the link below to see our listings on the FibroAction website,
Aisha mentioned pen pals which is a good idea if you have difficulties leaving the house. I wonder maybe that is something to consider as it is always nice to receive a letter.
Have you any hobbies? I personally found from past experience that when I was lonely and having a flare, I tried to occupy my mind with new hobbies. I often dismissed creative craft type hobbies as I was never good at Art but I found card making can be quite therapeutic. Try something completely different and maybe you may really start to enjoy this new hobby!
Hello Emma, on the list I can't see Mendip Fibromyalgia Support group in North Somerset. It is a very active group with growing members, we have a normal group that meets once a month usually with a speaker, some members also meet up twice a week at a local health club that has a spa and in sympathetic to fibro, we also are just starting a craft group that will meet once a month on a saturday for people with children or people who work, we are going to start a library of books and equipment that might help with fibro, we have regular trips which we subsidise where we can to Bath Thermal Spa. I am also thinking of setting up a wellness support group where we can meet up maybe two weekly in members homes and learn how to do holistic massage on our own bodies, practice meditation together, etc. So how do we get on to the list?
Oops I am sorry, I should have said to start with. I'm in Australia. It's about as backward as it can get in relation to Fibro. No such thing as support groups or social services that offer support
We don't qualify for any assistance & are living hand to mouth right now. Our govt doesn't provide social housing etc. Can't afford transport costs, which are high & I don't drive. All these things contribute to me being housebound. So we don't have anything for hobbies....they're luxuries we can't afford.
At present it's a miracle that we still have internet. I've been watching TV & playing computer games & I'm bored beyond belief. I tried joining the local library but they've cut funding so much that any books I'd like to read have a cut off at 10 people. It's so frustrating.
Thank you all for your suggestions, in normal circumstances they'd all be workable.
Well, jennie, I know it takes a lot of energy and maybe you don't have it, but there must be other australians feeling the same way as one in 50 people have it and there are more than 50 people in Australia, so why don't you put an advert in a local paper or start a page on facebook and try to start up a little group to meet up once a month to raise awareness? One of the problems with fibro I know is that it saps your energy and it might be asking too much, but if you could do it, it would help others in the same situation. Hugs x
Hi, I have been isolated many times in my life due to being a service wife. My fibro. etc has left me isolated at the moment. I know it is not easy. Are you able to volunteer once a week? with flexibility built in? ( for the bad days) How old are you? do you come under the age concern group? ageuk.org.uk/about-us/local... email address for local support. University of the third age, has a local group, they do everything from art to dancing to conversation groups, and they have travel groups for day trips, and holidays. And their is the age old night classes. Or on the internet are friendship groups, that meet up and it is very flexible what you join in. Re building your life takes time, and effort, growing a friendship is a long process, but just doing it day by day is what makes a richer life. I am working on mine, and it is a work in progress.I have Fibro, chronic fatigue, costochronditis, diverticulitis, and one or two other itises, so life is challenging for me, but I refuse to give in. A Journey of a thousand miles starts with one step. We don't get life building classes, but I suggest you start with what interests you. Is it art appreciation? or music? or visiting gardens? somewhere there are others who like the same things, take that first step to finding them, Have a Good journey. Don't let Fibro win.
Most of my interests are in Britain....love you Poms...hehehehe
British architecture
British history & archaeology
British people
Cornwall.
Walking in the countryside...and NO you cannot do it here. You can access National Parks but you have to drive to them & then drive back to where you live after you've done your walk. They're usually miles from anywhere in areas public transport doesn't service.
We don't have rights of way in the countryside. So you can't walk from one village to the next across field for example. You'd be forced to walk on the road & there's no point to that.
And there are no paths around a village/town like in some places in Britain either.
Makes it all the more frustrating. Not that that it would be an option right now anyway.
I looked into volunteering...organizations here want you to commit to 3 days per week for the 1st year. No, I'm not having you on & you have to be fit enough to do it too. Yes, they assess you now
That's why I decided to ask what others with this illness were doing.
HI, Jeniwren. This post is so old that I don't know where everyone is now. But, while my story is very different from yours I'm am also very isolated. I don't have anyone that I trust enough to be able to call or depend on for support of any kind. I'm in the US in a fairly rural community that doesn't have many services and it's a very "pull it up by your bootstraps" kind of culture so there is not much empathy for anyone who cannot metaphorically pull up their bootstraps any higher. Such a defeating feeling.
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