There seems to be an assumption that just because you have fibro/are disabled you don't work. i notice on here that there is a new group opening for disabled people - again it is in the daytime. I am of working age and my husband cannot work due to a stroke (He tried some groups but they were full of retired people and he felt that they did not have the same interests - rock music, fast cars and bikes- or experience of the system as they had pensions) so I have to work part-time, no matter how difficult or painful it is, or risk losing my home.
The doctor and other agencies have given me leaflets including groups I may find beneficial but all are in the daytime. OK, as I work I don't need the social aspect so much but am sick of the doctor, mental health trust, etc asking whether I have been to ... yet and in each case I haven't because i've had to work. They then say that that is all that is on offer!
I can relate, when I organised a group I changed the day of the week and the time so we went from an evening to an afternoon to a weekend. Have you thought about organising your own group?
No contacts for a venue/funding and find working while ill exhausting. Some of the groups suggested by the doctor are NHS run/funded so would be really helpful if I did not have to work. Don't want to set up a group just for socialising/people to have a moan but would like to be able to get to something useful as there are people who help to fill in forms, NHS groups where you meet those commissioning treatments, NHS specialist nurses, etc.
Hi Badbunny, wish I could offer some help, wanted to say it seems to be a problem for other people's support groups too. My Dad has been going to a support group for people with stress/anxiety type problems in the evenings for years. But now, for some unknown reason, the two groups for newly referred people have been moved to the daytime, leaving my Dad's group, which is more or less self supported, financially as well as within the group, as the only one held in the evening. Don't know what's going on, perhaps it has something to do with all the councils budget cuts, meaning groups can only operate in places that are already open to cut the costs of running them? Good luck with the working, try and take care of yourself, for your husband's sake as well as yours. I pushed myself daily to keep working, dropping my hours till I was part time, then got downgraded to a lower pay grade with less responsibilities as my work suffered due to my health problems. I desperately wanted to quit my job due to this, plus the office bullying and politics, but with two young kids, mortgage, etc. etc., we needed the income my job brought in. It all got too much when after one holiday I just couldn't face going back. Hubby said he valued my health more than any amount of money and told me he wasn't going to watch me have a breakdown and said we would find the money for the bils and that I was never going back there. Yes, for a while it was tough, but we!d look at each other and smile, knowing that I would never have to go back and face those bitches that made my life hell. Good Luck and Big, Gentle, Hugs to you Both, Julie xxxxx
Thanks - unfortunately, no other way of finding money for the bills so work I must. I did try to claim benefits when my husband first had a stroke but they said that as a couple we were only entitled to £110 per week - can't even meet the mortgage on that!
He has had an assessment for PIP - we are awaiting a decision. I have also got a form for myself but got sent a paper copy despite explaining that I cannot handwrite!
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You could both be entitled to PIP as it is not means tested. It is for the extra cost of being disabled weather you work or not.
If wishes were horses, beggars would ride, when action for what is wanted is more effective than waiting for someone else providing what is needed. A meeting run through skype or social media if others with common interest are not able to attend/ organise meetings - only a suggestion for positive action.
Unfortunately the NHS groups, etc, don't offer this. Meetings are mostly in church/community halls. However, I will email the groups the doctor has recommended with this suggestion. However, it still would not solve the problem for those like me who work unless 'experts' would be available at other times. I am not lonely and short of a social life - go out to easy exercise groups 3 times a week - but not getting help I need due to popular assumptions that disabled = does not work/old.
Do this when bed bound patients still want a voice, I have taken part in meetings that were a round table of those that could not travel at the times the meeting takes place.
Hiya badbunny, i agree all the groups, treatments etc are during the day. It does seem to be a presumption that we never work. I woyld find it easier to get to an evening meeting as sometimes i need a days worth of medication and time to be able to walk. It would also be easier to park,i cannot attend my nearest group as it is i middle of town and never space to park. The only thing i can think if is to contact the relevant people and enquire about starting a group for working participants of an evening. Wishing you success,
Hi badbunny. I posted a new group yesterday for disabled people. Under no circumstances was I implying that people with fibromyalgia don't work. I have fibromyalgia and I run the group posted. Some days are better than others. Yes some groups are in the daytime but a colleague of mine runs a group in the evening at the old post office in Fishponds Bristol, on the 2nd Tuesday of the month between 6 -7.30. Most people stay after for a chat.
I am sorry if I offended you in anyway as, that was not my intention.
No, you didn't offend and I wasn't getting at you. The doctor has recommended two NHS-linked groups - gave me all the literature - and both are daytime only. I have had to change physios as the one I was allocated could not see me at times I was not working (I only work part time and finish early afternoon so I could go to a group at 4pm but not 12 noon). I have been offered help filling in my PIP form - if I can go to a place in the daytime. I live in South Birmingham and there is nothing in my part of the city in the evening. I get too tired to drive an hour each way for one or two hours' meeting.
have u tried ringing Carers UK helpline? They may have some ideas on how u can get help filling in the forms etc in evenings, weekends as u can't go in daytime.
i can't guarantee it but def worth a try.
if there is anything available they will know. Also try Carers Trust at carers.org as they are a national charity but do work across the UK. In my area they have Carers Support Officers that can come out the the carer's house at a convenient time and help with filling in forms, welfare, advocacy. Don't know about elsewhere but worth looking into.
The below may well also help you (it's advice on how to fill in the forms):
I am so sorry to read this, and I genuinely hope that you can find some resolution and relief to these issues. I can relate to what you have written as I have been approached by a group for a different disability that I have and they only meet on Thursday mornings and I cannot attend most things during the day unless they are really urgent.
I want to wish you all the best of luck and I sincerely hope that you can find the answers that you so desperately desire and deserve.
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