was going to post a happy post but got deflated

[suzannah16]

I was going to post a happy post for once. since coming off my blood pressure tablets [with reluctant doctors permission] I have lost 4lb [2K] of the 42lb I put on with the tablets and my blood pressure has gone down too.

but then my mother deflated me. It's her birthday on sunday and yet again my sainted brother has sent her nothing, but it's not his fault because he can't get out to buy a stamp. my brother has bone growths in his hips and has strong painkillers, a wife and 3 children, mobility scooter, motability car and top care benefit. He can lay a carpet and laminate flooring, decorate his house from top to bottom, painting and wallpaper. put in a new bathroom and kitchen, but he can't get to the post office for a stamp. I get ESA plus support group extra, no PIP at all I have no husband or children or mobility scooter. my car I've had to save up for myself and I couldn't even paint a wall without falling asleep. but I send cards and presents for every birthday etc with little thanks. my insomnia is because I am lazy and I need to do more to make my self tired. when I had gout a while back, well everyone gets aches and pains, my mother now has gout herself and is sitting in a chair giving orders all of which I get wrong. I'm beginning to think my mother should get a job as a benefits assessor for ASOS or whatever they are calling themselves this week.

[Shorthouse]

I don’t know how old you are?you have got to learn to let the people that cause you stress to get on with it .they aren’t going to change.because we give a **** we get ill.stress is a killer .try to rise above it count your blessing(there are many)it isn’t easy..don’t let the buggers get you down .mix with your positive friends.good luck and hope you soon feel better.

[honeybug in reply to Shorthouse]

Xxx

[sprightylisa in reply to honeybug]

I just had to miss 2 days of work due to stress and I completely agree, Lupus won’t kill me but stress will.

[honeybug]

Xxx 🤗💗😘🙏

[Hidden]

Well just try to reflate (is that a word?) by focussing on walking with me and my dogs on Lunan Bay once my hubby starts a new job (soon I hope - we are skint) and I’m up to driving a bit further than I am able to just now okay.

I could say similar things about my sisters, both with very cut and dry, PIP worthy disabilities. But I won’t let myself because it’s unhelpful to pit ourselves against other kinds of pain and more visible and better recognised disabilities than ours.

Is there a Lupus group close by enough for you to attend? Or any kind of support group for people with long term conditions perhaps? I feel you need a support network made up of those in similar situations so you can feel empowered.

I know this kind of group set up exists for those in your area with mental health conditions because I was going to do an art project with them - if we had only got the funding.

I’m sure there must be something similar for people living with long term physical conditions locally. Worth looking up through the council site and through local and national charities? X

[eekt in reply to Hidden]

The South and East Scotland Lupus group is meeting in Dundee in December...though I know transport is tricky for you Suzannah16...but getting away for a couple of hours would do a lot of good...

There's a social in Edinburgh too, next weekend

facebook.com/pg/South-and-E...

You've probably seen this story, but how about taking up contact with Moira, she must live fairly near ?

eveningtelegraph.co.uk/fp/i...

It's a horrible situation to be in, when there's no empathy at home XOXOX

[Hidden in reply to eekt]

Ooo I’m a member of LUK Eekt. Wonder if a Sjogi like me with borderline Lupus/ RA/ Scleroderma mix would be okay to attend on 8th? I may by then be so empowered by physio and OT and sorting out ducking neuro a few days earlier - that I am up for coffee and cake with fellow autoimminers? I might even be up to picking a few others up too. I have attended 2 BSSA meetings in Edinburgh since diagnosis but, tbh, I felt a tad too...I don’t know..something in me didn’t belong and it’s too far away for me to drive for an hour of coffee and cake in a church hall. X

[eekt in reply to Hidden]

I would say so TT, and it's possible you might be driving past Suzannah's road end ?

Edinburgh has been the nearest LUK meeting to me, and likewise, it's an hour's drive...don't fancy the drive back in the dark after the November social, but it looks like it's going to be big! xxx

[suzannah16 in reply to Hidden]

got depression appoint on 8th with GP, not looking forward to it

[suzannah16 in reply to eekt]

i've tried looking for groups near me but all seem to be in Dundee and petrol costs mean I only go there when I have hospital appointments, I just about get enough travel money to cover parking and petrol. I do sometimes wish I could move out and just visit parents but I feel I owe them for looking after me when I've been bad and now they're in their 80's they need someone there all the time because they are doing stupid things they have never done before in their lives. [ dad locks the door without closing it so it's open when I get back from a walk. mum keeps boiling the kettle then putting a dish cloth on it ??? the kettle is especially bad either of them could pull the cloth off and burn themselves] they just do silly things that add up. if I say anything mum especially gets a bit aggressive pointing out ALL the things I do. she wouldn't accept help from anyone including me so I have to just turn the cooker off, and the running taps, move the cloth off the kettle pretending I need to use it. I doubt if any doctor or whoever would assess them as at risk because they seem on the surface to be doing well for their age. it's just so deflating and tiring. I think it's one of the reasons I try to walk just to get out for a break.

[eekt in reply to suzannah16]

Oh Suzannah, DO ask for a social work assessment, they ARE putting themselves at risk and you can't be there ALL the time. I looked after my mum, she had vascular dementia, crippling arthritis and quite possibly undiagnosed lupus given the wide range of -itises she had, and I ended up a patient too...it's draining in a quite unimaginable, distressing way...that was why integrated health and social care invented, too much strain on families as carers.

Talk it through on 8th, my GPs were helpless in getting care for my mum and could only watch as I crumpled...and that was when Lupus reared its head in a very active way for me...but nowadays there are swift social care processes XOX

[suzannah16 in reply to eekt]

mum wouldn't let anyone in the house. recently we tried to get a walk-in shower we did it in mums name in case it affected my ESA. she didn't like the questions they asked and told them she had changed her mind. admittedly the woman who came round did treat mum like she wasn't there and spoke to me instead but I had warned mum in advance what sort of things they wanted to know. she wouldn't let anyone like a social worker in. about 15 years ago mum had a heart condition diagnosed and was in hospital for a couple of weeks. she has been on tablets ever since, she has no consultant check ups and her medication has never been reviewed. I told her she at least should see a GP in case she no longer needs some of the tablets or could maybe change some but no way will she do it. says she likes things the way they are. she is quite active around the house doing house work and gardening [ when I try to help she just does it again because I don't do it right] but she will not go shopping anymore [lets me do it then complains about what I've bought her] she does go out in the car with dad but won't get out. says she can't walk far. I bet she walks further than I do in a day.

[eekt in reply to suzannah16]

these are all things to talk about on 8th, I can completely understand how difficult it is for you XOX

[suzannah16 in reply to eekt]

I suppose a lot of mum's problems are because she has deliberately made herself relatively housebound and she gets lonely and bored. but physically there is no reason for her not to do things. I've tried to get her to come out with me but she's stubborn and there's always an excuse.

[Paul_Howard Partner LUPUS UK in reply to suzannah16]

It's worth contacting the group and letting them know if you have difficulty attending the meetings. Elaine (the group coordinator) is working very hard with the other volunteers to get groups re-established in as many areas as possible, with the group in Edinburgh being the most recent. I had an email from her yesterday and she mentioned there is now a growing interest in Fife so they may be able to restart meetings there too.

[sprightylisa]

Wouldn’t a phone call do the trick?

[suzannah16 in reply to sprightylisa]

If only. no I share a house with my parents they looked after me when I was really bad now I try to look after them. I often wish I was the parent because then I could tell them what to do but as I am the child regardless of my age they won't listen to me