We now have storms with names in the UK. Abigail didn't bother us too much, but Barney ... he was wild. And my brain is full of fog.
I do quite a taxing voluntary job. The thing I find most difficult is that cases involving benefits, housing, money, debt etc. etc. really need to be wound up on the day. I never was the sharpest knife in the cutlery draw when it comes to such things, but when it's getting late and I've still got loads to do I sometimes tend to think that PsA isn't helping.
So yesterday I did something I've not done before and stated the bald facts as I saw them: "my brain has stopped working. I cannot do this. I need to go home."
Got home okay despite Barney to find the house lit up by candles, a power cut. Ate, conked out. Woke up long enough to mention that it was weird I was so tired and my husband stated the bald facts as he saw them: "it's the disease."
It is the disease. It's so long since I've had swelling or persistent pain, but I do now. My rheumy found some of the swelling because I've got out of the habit of looking. I am knackered. I'm not used to flares or wotnot so I need to keep the faith that things will improve again. For various reasons a change of meds is not on the cards at the moment so it's wait and see time.
Sorry, Sybil. I hope the fog and the entire storm blows over soon! You're a tough girl! Hang in there, I think your doctor will get you on some meds that work! It always seems bleak during the flares, but there will be better days. :-)
Sorry you are suffering.Nasty weather isnt it? I am in ireland and we had terrible weather yesterday and last night.I am in a flare of either my arthritis or fibro or both.Could be because of the weather.Hope you feel better soon
We watched the UK weather forecast for the week the other evening. It looked horrendous! I'm not at all surprised that your brain isn't firing on all cylinders.
Look forward to the sunny days, and cut yourself some slack, my friend.
Not a bad idea. I spend a lot of my time painting and there are special lamps that provide a 'natural' light for painting by that I've been hankering after for ages, one of those might kill 2 birds with one stone.
I have a family member with severe fibro and over the years I've begun to realise just how much pain it gives her. And of course for you it's that bit more complex. Are you satisfied with the meds you're on?
Queenpink said:
Thank you sybil.You can get SAD lamps that might help.To be honest the pain has been getting worse all year i hope it gets better soon.
My fibromyalgia is pretty bad im mostly in bed most days because the pain is so bad.No i am not satisfied with the meds im on what so ever.My pain is at a 9 right now and my mood is bad as well because of the pain.Even taking a shower is painful.
I am sorry to hear that. I'd be in a foul mood too. Is it still the case that you've got investigations coming up for the AS?
If you want to talk it all through with us, please post. It can be a relief to express how you feel and what you're concerned about but also we might just be able to help. I hope you have a better day today (Thursday).
Queenpink said:
My fibromyalgia is pretty bad im mostly in bed most days because the pain is so bad.No i am not satisfied with the meds im on what so ever.My pain is at a 9 right now and my mood is bad as well because of the pain.Even taking a shower is painful.
I am waiting for an mri and a scan of my hands and feet.I get in foul moods when im in a great deal of pain.im depressed an din a bad mood atm and quite bored.I might read or have a nap.How are you today?
Queenpink, many of us here have a PsA patient orientated book in a series called 'the facts' published by Oxford University Press/Oxford Medical Press that is something of a 'bible' for us. I've just had a look and there is a corresponding A/S book so I wanted to let you know about it in case it was something you were interested in. Here is a link for you to take a look. If you have a Kindle or Kindle App there is also an e-book version.
I also own another couple of books in the series - Living with a long term illness and Inflammatory bowel disease - and can vouch for the same quality information and advice in them.
Might the MRI help with deciding on the best (better?) treatment plan? It sounds as if you're being looked after by your rheumy team but I realise that thought doesn't help so much when you're in a lot of pain. And knowing what to do with yourself when you can't be as active as you'd like to be is a real challenge. I bet you'll work out some strategies as time goes on, but this does sound like a very difficult time for you and you know that if we can help at all we will.
Well, today I went in to the office and finished off my unfinished business - it took all day. I'm having a lot of trouble walking - it's the top of my legs at the front which I guess might be SI joints. On the plus side, I got a letter from dermatology informing me that the biopsy I had 3 weeks ago does NOT show skin cancer .... it's great getting some good news!
Queenpink said:
I am waiting for an mri and a scan of my hands and feet.I get in foul moods when im in a great deal of pain.im depressed an din a bad mood atm and quite bored.I might read or have a nap.How are you today?
Cheers Grandma J! The 'thing' on my arm has had so many opinions chucked at it since February and the official verdict is: it ain't nothing except an odd looking bit of psoriasis or eczema. As well as feeling relieved it means I don't have to stop Humira or Mtx.
Grandma J said:
Omg, Sybil!!!! Yay for the great biopsy result!!!! :-) :-) :-). :-) :-)
A lot of us around here basically think it's all about the treatment plan. Well, that's not quite true because there's a lot we can do to help ourselves as well, but so often it all starts with the mind-blowing discovery that actually drugs that can bring a whole lot of relief DO exist.
I would like to think that a range of medical professionals involved in helping you: rheumy, physio, GP etc, would get together and coordinate everything they're doing to make sure you get the best possible care. That might happen, it just might. But all too often it doesn't and we the patients have to diplomatically fill the role of unofficial coordinator. And to do that you have to get an angle both on what you want to happen and on what it is reasonable to expect so that you know what to ask for, what to chase up, who to contact etc. It can be very difficult to be that proactive and assertive without support.
Queenpink said:
Thank you for telling me about the booki will check it out later.I definitely want to read some good books on AS.
Yes the mri will help decide my treatment plan.Thank you for offering to help some support would be nice.
That is soooo great about your biopsy result very happy for you :) :) :)Sorry to hear about your pain i hope it has eased a bit
I think this is a great idea but made me laugh too, it's a case of "you know you've got PsA / AS when ..... unexpected items appear on your Christmas list!"