Old Style Ways and Poor Health part 2.

pollyanna_26

MingVase said:

Not seen a consultant, not fussy either if my endo heifer is typical. I havent ever been given any meds at all for ME and I think fibro is lumped under that heading too is it not? Nobody mentioned anything anyway so I asked for codeine and got it.
Struggling with.. well pain. I'm one of the very lucky ones who never had pain with ME, at all. Now every single bloody joint aches like hell. Add that to the rotator cuff injury LOL let's just say that I drop a lot!! But the pain does drag me down and make me miserable sometimes. I went to bed at 7.30 last night just to get comfy.
We're still in lockdown here thank god, I'm not in a hurry to mingle. Sainsbugs once a week delivery and amazon filling in the holes. We think we'll just wear face masks for the rest of this year, won't do any harm.
Garden yes, gotta swing and a lounger, just need the sun now!
Feel so bad for yr daughter, she doesn't have it easy does she xxx

If I remember rightly your tore both rotator cuffs. I just tore one. Mine got past the terrible shouder blade pain but I struggle more and more with carrying shopping , now I'm trying to get everything in one go from various shops it's really kicking it off. I'm dropping things, breaking things and I don't think the fibro fog is the only thing to blame for losing stuff only to come across it a few days later where I'd looked a number of times.

I never had pain with the ME/CFS just total exhaustion and all the other symptoms. I've not long woken up! Tossed and turned all night. What remained of my sleep pattern seems shot to pieces at the moment went back to bed this morning read for a few hours and managed about 4 hours sleep.

Is your GP keeping in touch reguarly? With the Addisons, ME, etc and being under Sheilding they should be. Fibro is a condition in it's own right and there are a number of effective meds to help. There's different opinions on meds for ME and CFS . They help some but self help is helpful too. Trouble is is if you have multiple conditions you have to actually have the energy and motivation to do the self help.

Youngest has worked through all the stuff from Rheumatology and the really Good Physio she saw at Health and Wellbeing.

I take it you're on meds for the Addison's.

Don't know if your GP is the one K saw but it sounds to me as though you need to speak to them about how much pain you're in and how much of a struggle things are. If they haven't kept in touch you're allowed to phone or email if your surgery has online contact as ours does. Yhey can book you a phone appt with your GP.

You need along with everything else to be assessed at Rheumatolgy. They will not only check for Fibro but various forms of Arthritis too. DD and I Psoriatic Arthritis, Osteo Arthritis and Fibro and I know many others with those three too.

Hope the RV is plodding on ok. I'm going to get a much needed cold drink. It was dreich here when I opened the curtains when the dawn arrived. I woke before to blazing sun and a heatwave.

Codeine is not the best option Mar. I very rarely take it , I needed it with the rotator cuff but Superdoc warned two weeks only at the recommended dose. There are better solutions .

Hi Tink back in a bit!

pollyxx.

MingVase

I will phone the good GP as soon as I can talk on the phone without crying. LOL! Not going to make an a$$ of myself in front of them or anybody else. I just desperately need to feel better.

Steroids for Addisons, if I stopped taking them for 3 weeks I'd be in a coma or dead.
What is better than codeine Polly?

pollyanna_26

Tink_04 said:

Hi everyone, It’s so good to see this thread active still!

Polly I hope you and DD are well now?

I am in the shielding category so holding up, it’s boring at time’s and manic at others so it’s quite surreal. We have been trying to home school and DH is still working from home which is good.

The PIP seems to have just stalled with the current circumstances. I sent the forms back but have heard nothing and the arrangement has not changed so hoping it has just been filed to continue on as it has been until it’s next review (fingers crossed).

I need to get into batch cooking and get a better grip on shopping as it’s so much more expensive online and the kids are eating constantly!

We have tried to grow some bits in the garden but I’m not very green fingered to be honest, will keep trying tho. 

The kids are struggling at times and so are we but trying to take each day as it comes, I hope everyone is staying safe and well and managing to get through this time.

Tink

We haven't been quite that active Tink! I posted at the beginning of April then Mar woke us up yesterday..

Did you get a confirmation letter or text to say the PIP form had been recieved? They've been sending those out while working out what to do.. I've seen a few people who've hung on the phone checking they did recieve the form. There haven't been many staff in but they're now bringing some back. Some people have had paper assessments others waiting until FtoFace are up and runnng again. if you have the letter or proof of posting keep them safe.

The children will be past the point of novelty now with no school. However they'll be missing their friends ,granny and grandad and getting out and about. At least all four of you are together under one roof.Luckily dds boyfriend works mainly from home in normal times so it made more sense to take here there for however long the Sheilding lasts.

I'm not under Sheilding but as I've already posted I've done a few quick in and out as quick as possible shops.

Some slow and steady batch cooking is a good idea. Just as and when you can.

We seem to be in for mixed weather so things like quiches that can be served with salad or veg should do the job on the warmer days.

Good old Jacket potatoes with a filling and some veg fresh or from the freezer are not too much faff. Batch cooked and frozen soups are one of my standbys.

How have the children taken to home schooling? There's a lot online for that. Joe Wicks early morning workouts look brilliant to wake them and the grownups up. As long as they do some work it isn't a problem. I've seen youngsters being pushed by parents to be the best. Just keeping aa bit of routine with the work and adding some crafty and fun bits in is more than enough. It's not as though they're facing the entrance exam for Oxford when the schools reopen again.

I hope your managing OK physically and leaving work has helped.

If there's anything you're having problem growing I'm sure someone here will help. As you say prices are high so definately sallads and herbs and any veg you can. Fruit if you have bushes and trees. The garden centres are reopening here next week. I wont be there and I doubt anyone Sheilding or Self Isolating will either.

Take care Tink,hope your mum and dad are ok and you all stay well.

pollyx

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pollyanna_26

I find plain Paracetamol. I get the white caplets from Wilko. Various gels or creams help. I used to use Perskindol a lot cos it's natural. Now it's mainly Voltarol Emugel Superdoc tried us both with various types of V but the Emugel was most effecive. We both have it on prescription now. It's not a miracle worker but it helps me. Sometimes dd needs to take her stronger meds too but often it will help.

Codeine isn't good long term which is why you can't take it constantly.

If you can't compose yourself phone up anyway to ask to speak to the good doctor. They may need to ring you back but phone appts have helped a lot here.

I've rung over the years in tears when things were bad. No idea how many times Superdoc has passed dd the box of tissues to dd before she was coping better.

There's no shame in it Mardymar. You sound at rock bottom. Considering all you've had on your plate one way or another you've done well. Can't have you sinking into a black hole of despair.can we?

Dd had 3 rubbish consultants over the years but only good GPs . Superdoc referred her to a different consultant each time. She's overdue Rheumalology due to them cancelling the appt until a new consultant had been appointed . Until the present situation is over her new appt is on hold. Not every one is always lucky but over the last few years dd has got on well with those she has for different things.

It's cooling down here now . No idea what it's like up your hill but I do swear by hot water bottles , heat pads etc. Provided it isn't a heatwave.

As there are no Heffelumps available and I'm taking heed of Nicola I'm stuck otherwise I'd be social distancing with a loud hailer screaming pick the phone up now!

I can only send love and light your way and hope for better days to come.

pollyxx

MingVase

Thanks lovely pollywolly, I will try paracetamol and buys some voltarol, then phone the doc as soon as I'm compos mentis. They will always give a call back here, they;re very good.

pollyanna_26

Try the Emugel version it's stronger. I doubt many are going to be Compos Mentis for a while.

I'm still fuming at Neil Gaimen flying from NZ via the US to London then driving to Skye. Left his wife and son behind.

I watched the Good Omens series and thought he'd done a wonderful job for Terry. Don't think Terry would be very impressed with him.

Favourite home or not they should have locked him up in a police cell.

Hadrian's wall needs a big height extension.

If things keep on like this I'll self combust!

Hope you can get some sleep. No idea when my body clock will settle. That sleep earlier means unless I hit myself on the head I'll need to read a lot and hope to nod off.

Maybe worth trying Morningtown Ride in a slow ,boring drone as I used to to get the children to sleep. I used to fall asleep myself sometimes.

Night,night Mardymar. Tomorrow is another day.

pollyxx

MingVase

NN Pollywolly!

pollyanna_26

If you manage to get speak to your good doctor and explain about the pain etc, they may have a better idea for pain relief. Possibly more effective the Paracetamol . You can ask if the Voltarol is ok too. Until your're properly assessed and diagnosed.

The fibro med and immune suppressant dd takes can only be prescribed by a consultant. There are some your GP can prescribe. Superdoc prints the repeats of the meds he can't as he has shared care with Rheumatology.

Sleep Tight.

pollyxx

Tink_04

Just incase anyone should be shielding and has not had a letter or is unsure if they should be on the list, please register on the website and it goes to your GP who authenticates it.

https://www.gov.uk/coronavirus-extremely-vulnerable

off to catch up!

Tink_04

Ok I have caught up a bit again, think I missed a bit as had a lot of reading to catch up on, unless I had just forgotten I’d read it already!

The PIP had a deadline to be in by and we sent it back by then, we didn’t get a confirmation or anything so I’m assuming they have got it. It never occurred to me to check?

We are growing potatoes (in a bag) some french beans, lettuce and carrots in pots. I have courgettes and pumpkins starting on the windowsill with some herbs and spinach so will see what comes up. The garden has loads of space to grow but needs weeding and TLC which I just can’t manage so we are growing in pots for now. I’d love a raised bed or two but I can’t get the materials and I’m not going out browsing so it will just have to wait.

The kids do school work on a morning (the school have a page they have set up to use) and most days it’s a fight and a war but they continue on until lunch time then stop so 3 hours max (with break, snacks and arguing probably lots less!) 

DH is working at home full time still and it’s hard without the additional support we normally have (carers & cleaner) but we are trying our best.

I bought a weighted blanket last year when I was having sleep issues and it’s very good, worth looking into for sleep troubles. For things like restless legs, anxiety, fibromyalgia and loads of other conditions they is brilliant reviews. 

Take care

Tink