Struggling greatly at the moment :(

suki1964

It's pure pants getting to the stage when you have to ask for help

I know, been there, have the t-shirt and wear it daily

There is no shame in asking for help

So you find " friends" none too helpful but there are charities who do

So use them

Find a board for your condition, read, learn and use


Get a support group around you ( and don't refuse mums help, she birthed you and wants the best) Don't feel shame. You are poorly. You need help. Reach out for where it's available and take it

Pride and morals are for the rich and famous who only give lip service.

Get the help you not only need but are entitled too.

MrsTinks

One of my closest friends have fibro and the good news is she has good days and bad days - they're not all bad! She needed to learn how to manage her condition and what meds worked for her (she had intolerance to a LOT of things unrelated) - yes it's taken time, yes she still has bad days, but she manages an allotment with her husband, she just gravelled their drive way and she is running a little online business from home. She just needs to listen to her body and not push when it says no.

Give yourself time - and take one thing at a time. Find a cheap chest freezer and on good days bulk cook things for bad days - garden, well don't ask what people want - post up work for students and offer say £7.50 an hour and then tell them what you want them to do. ��

There is light at the end of the tunnel and its NOT an oncoming train ☺️

Toomuchdebt

Thank you all. It's good to hear people can manage to do stuff. At the moment I have bad days and worse days. Once they sort my pain out I'm hoping it'll get a bit better.

Pooky

Sorry to hear you're struggling. DH was diagnosed 2 years ago on top of his other issues. It's such a debilitating issue. It will take a while to get your meds right but keep pushing for the changes to your meds that you need, do some reading on what's out there and what works for others - there's a lot of cross over drugs that work for some and not others and the GPs aren't great at knowing what's what. If you can get a referral to your local pain clinic I'd highly suggest it. They worked brilliantly with DH to get him on to a much more stable path. There's still good and bad days and sometimes those bad days turn into majorly bad weeks but there's always the knowledge that it will pass back into the good days soon.

Take any help that's offered and don't worry if you need to use convenience food, you won't have to all the time and if it means the kids get fed then that's the most important thing. Maybe introduce a night of beans on toast and a soup and a roll night so that you know you've got something filling and nutritious to fall back on.

Have a look to see if there's a local volunteer organisation near you, they will be able to put you in touch with someone who'll come sort your garden. When DH first had his accident and wasn't allowed to drive we couldn't get to hospital appointments (I don't drive) but the local volunteer service offered a driver service, mostly retired people still wanting to help the community, there was a small mileage charge per trip to cover their costs but their time was free.

Most house checks are just to make sure there's a house still standing and that you've not ripped out the kitchen and put a bath in the middle of the living room, they will see a lot worse than an overgrown garden.

Hope you can find the help you need and can learn how to listen to your body's new needs.

Toomuchdebt

Thank you Pooky-I'm waiting for a referral to the pain clinic as it happens.
There isn't a volunteer service here, not that I can find anyway. there are skills swaps but sadl gardening is one of those that lots of people want and nobody wants to do it. I asked if I could go on a waiting list and she basically said there was no point.

FairyPrincessk

Try not to worry too much about the garden Toomuchdebt. It sounds like you can get the worst of it tidied up and it will not get you in any serious trouble, particularly given the circumstances.

If you have limited freezer space then I second the idea of some very simple meals. You can also add in eggs and jacket spuds to those ideas above. It is also good practice for your children who sound old enough to be ready to get some of those skills under their belts. I know you don't want them to have to do it all of the time, but once you're able to find a medication that helps you will start to have some better days.

It is a very big adjustment and in no way an easy or fair one. It is ok to need some time.

Big hugs.x

mirry

I had to reply to your post because I have fibro , pots & eds3 (dislocate my joints easily) and know what a struggle it can be, although I have my husband to help it's still so hard.
How long have you been suffering if you don't mind me asking?

Are there any neighbours who could lend you a hand or friends?
I expect you don't want to ask but they might surprise you.
I take omega 3 and find it helps with the pain a little bit, not so much in a bad flare up. Also the perimenopause seems to make the pain much much worse. So hopefully it will ease in time?
Magnesium tablets (high dose) help me sleep a bit better, although I still wake up at 4.30am which makes for a long exhausting day.
Now I'm giving up wheat and dairy, just to see if it helps more.
Hang in there and PM if you want to chat

Toomuchdebt

I don't really know the neighbours. They're a bit..um well rough and loud and I'm a bit scared of them to be honest.
I think this all started when I got MRSA in 2010. It's been steadily getting worse and worse and came to a head in December last year when I ended up in hospital for 9 days with severe pain. It's kind of settled at that level now.
I am taking omega 3 and 6. And magnesium.D3.multivitamins.Garlic tablets. Blood pressure tablets which aren't working well(I had 2 types until a few days ago but amlodipine was making my feet swell to twice their size so doc took me off those and doubled my dose of Ramipril). He's prescribed alzain for pain but I'm a bit scared to take it after my experiences with amitriptyline and gabapentin. I asked for tramadol but he refused as it's addictive. I wasn't planning on taking it every day-just on the days when it hurts so much I can't move.
I feel like I'm being a whiny brat...the doc originally suspected MS and rheumatoid arthritis and even a brain tumour so I'm so glad it's not any of those. I just want to be able to get up and enjoy life again.

mirry

Im not good with thos meds either, and wonder if theres autoimmune issues going on as I'm always so fatigued.
What foods do you eat?
I'm going all clean as an experiment to see what happens.

So no wheat/gluten, dairy or sugar. I'm slowly making a list of what to eat and mainly do online shopping, it's tough when the energys gone and the pain is high.

Have you phoned your local council, as I know ours have the number of gardeners who work for the local elderly/disabled for very reasonable rates.

Toomuchdebt

Well ...the council don't offer any kind of help with gardens,social services don't help,Cheltenham Community Project don't help,P3 don't help,Oakley Neighbourhood Project don't help.None of these organisations keep lists of gardeners. I'm on the phone one last place...he's seeing if anyone can help but they mostly help charities not private tenants. So looks like I'm on my own with it .