Could I really be this unlucky?

Toots

Hope the eye man has good news for you Jenny. And don't get stressed about going to work - tell them what you want and no more! Hugs x

frogmorton

Hi Jenny

Just popping by to check on you :areindeer:

I hope all goes well at your appointment and going into work is a great idea

You will probably 'make' their Christmas :xmas_cheesygrin:

take care and love

Toni xxx

thistlegirl

So the eye hospital was sadly predictable. The inflamation (Iritis/Uveitis) is active in both my eyes so I need to start the eye drops again. I guess the steroids are beginning to clear out of my system. I expected this as I can feel/tell quite well what is going on with them-vision blurs a bit etc. Though I didn't realise how bad until I did the vision test at the hospital. I could have cheated as I know the letter chart off by heart but decided to be good-Santa is watching :noel:
Back there in a month to see if things have settled, the drops work well so not expecting anything bad, just annoying putting in drops 4 times a day-though better than every 2 hours which I have had when things were really bad. :madnoel:

Arthur and my eyes usually get active together but hopefully he will stay away until after Christmas.....

Visiting work was ok, I went in before my appointment so I had an excuse to leave. Lots of comments on my weight loss :areindeer:
I didn't get to see everyone I wanted and saw some I didn't but they know I am alive and "well".
I was completely wiped last night and today, I never realised how much the visit took out of me until I got home. I am still really struggling today, my cold is still hanging around which isn't helping. More couch time for me, I have managed some cooking and washing using my advert break routine- Watch programme and during the adverts get up load washing machine/chop veg etc. sit back down and watch til next break and continue. 5 mins activity with 20 mins rest in between, amazing what you can get done.
I am keeping my head above water but I think I may need to ask for some help to get my flat back under control again soon. I need to learn how Mary Poppins clicks her fingers and things tidy themselves away....if I shaved the cats I wouldn't need to hoover as often?

Jenny

frogmorton

Well done Jenny

Sorry about the uveitis/iritis is present, but I think you suspected as much anyway.....and yes cheating is a BIG risk this close to Christmas :xmas_cheesygrin:

I know I said it before, but work will have been so pleased to see you - shame you missed some you had wanted to see. They will hear you've been in.

I gues that ATM you have to 'listen' to your body an rest if you need to. Mary Poppins?? Now that is a good idea.

Give me a shout I'll pop over



love

Toni xxx

stickywicket

I empathise about the eye drops. I ever I need any Mr SW has to do it. It's a bit hit and miss if he's been to the pub :xmas_cry:

I don't wonder you felt wiped out. Visiting work plus a hospital appt. plus a cold - each one is enough in itself. I think we underestimate the mental/emotional fallout too. It's not just the physical stuff.

I like your ad-work-breaks. It's a great idea. Some breaks can be quite long. 10pm always used to be almost programme-length.

I have gift-wrapped Mary Poppins (What a fuss she made :presents1: )and shall pop her in the post :noel:

thistlegirl

SW mary poppins still hasn't arrived, Christmas post holding her up! :presents1:
Well I am now sleeping with a pillow between my knees, waking up stiff and achy. Slow starts in the morning and going downhill after dinner. Still mobile and pain is bearable but I think I will be reaching for the pain dullers again soon, I am going to try plain old paracetamol tomorrow and see if it does anything. Merry Christmas to me.
My days are getting messed up as it is taking a while to get to sleep and I am waking in the night needing to change possition due to hip, shoulder pain. I am sleeping late to catch up and now messing with my body clock too.
I think I am going to see the gp tomorrow, I have had a dull pain on my right side going from under my ribs to my hip, it has been on and off most days for 3 weeks now.....probably nothing but thats what they said in may too and look where that led to.
One more present to get and that is me done, thank god!

sorry about the moan
Jenny :madnoel:

stickywicket

Oh dear! It's all going a bit wrong at precisely the wrong time, isn't it, Jenny? I hope the doc can (a)help and (b)reassure you. I am thinking of you. ((()))

frogmorton

HI Jenny

I am sorry about the 'new' pain, but totally agree - safety first for you :areindeer: Maybe the GP will suggest something for you to help you sleep/ease your pain too.

Nothing much worse than lack of sleep except lack of sleep AN pain :roll:

Love to you and ((()))

Toni xxx

thistlegirl

.....went to the gp.
It is definitely not appendicitis, yeah me.....her phrase was she thinks it may be more of the same. We have an unspoken agreement not to use the C word but that is what she meant. My scan in January is now even more important ( she was going to send me for one if I didn't already have it booked) It could be something it could be nothing, as usual.
I had a glimpse into my future today, the docs are already cautious with me "well because of your history I just want to make sure" I have ended up in A&E every time with NHS 24 due to my 'history' Now it looks like every ache, bruise and lump is going to end up with a scan. Glad they are being thorough but the delay sucks. It would be great to be told once by the gp that it is nothing, go home and stop wasting my time!
I never in my life thought I would be wishing for Arthur but compared to this he is easy, at least with him I know what to expect ans how to handle him.
Dear Santa, for Christmas I would like some patience, I have completely ran out of it this year and I need it more and more each day.

Jenny :xmas_evil:

ouchpotato

Oh Jenny, I'm sorry to hear that. But the doctors may well be being over cautious, which is a good thing seeing as it means you get dealt with quickly, but a bad thing as it has you thinking the worse all the time. I wish I could get to you to give you a great big (but gentle) hug as it sounds like you need it.
What are your plans over Christmas (apologies if you have already said this further up the thread)? I do hope you can enjoy it.

I'll be thinking of you

x

stickywicket

Oh Jenny, this is so what you did not want to hear. The timing is rubbish too. I just hope January's scan brings better news.

You are quite right. There are worse things in life than arthritis and this prolonged period of uncertainty is one of them.

I don't think you need patience: I think you already have it in spades – and wisdom, and common-sense. I shall ask Santa to bring you the more traditional Christmas gifts of hope and peace and a happy, healthy new year. (((()))) :santa:

Toots

Huge hugs Jenny. Gentle ones. And more. Hang on in there sweetie xxx

thistlegirl

I hope you all have had a good Christmas and will have a healthier New Year!

My sisters have started the annual campaign of you must be out for Hogmany. I hate it on many different levels:

I am sober while everyone around me get very drunk.
It is [text deleted] freezing but we will stand outside for an hour for the fireworks at the castle.
Standing for the fireworks and normally power walking for 10mins to get to the viewing point.
The night doesn't even start until after 10pm and goes on til after 2am.
It takes me days to recover from the night.
There is either no seats or very few so if I do sit down I am isolated from some of the group as they are all standing.

This year we are having a big family meal at my Aunts on New years day and they want me to go to the SCO concert in the evening (not into classical music much and not looking forward to sitting in uncomfy seat for hours)

I am tired, sore and grumpy. Not in the party mood as it takes a lot of energy to do small talk and smile. The only thing making me grumpy is being told what I should be doing on Hogmany and I should feel that I am missing out if I stay at home :x

Roll on 2014, I haven't liked a lot of what 2013 brought-except from my lovely baby niece of course.

Jenny

Text deleted due spam filter picking up a swear-word
Moderator AC

thistlegirl

I seem to have talked a lot about sleep during this journey and here I am again.....I suppose it is good that I have not needed to complain about pain, nausea etc, well not for a while anyway!
I have been in limbo now for over a month and I think my body and mind have gone into hibernation.
I have been 'sleeping' a lot, well I am in bed for about 10 hours but I am waking a lot during the night as my joints are.....grumpy, stiff, sore, all of the above. I never feel like I have had enough sleep. Pretty much by dinner time I feel exhausted but I wont be asleep til after midnight(if I am lucky!) Tried sleeping tablets for a couple of nights to try to fix my body clock but they didn't help either.
I have been reading loads but other than that no knitting or anything productive and it is very strange for me. I have always done something always felt that I achieved something at the end of the day, not so much at the mo. recently if I have been up and dressed before noon it is a miracle! I don't like the way the days are merging into each other but I am so tired most things seem like too much effort.
The little voice in my head tells me that the more I do the easier it will get- the voice is getting louder so I guess I am ready to listen to it, I think.

So tomorrow I am starting operation move your butt. I have moved my phone and alarm clock out of reach so I can't hit snooze til they give up. I have also set the washing machine to do a load first thing, the noise should wake me and I can't stand leaving a wash in the machine!

Fingers crossed I get things done, if I get dressed, hang up the wash and get to the shops it will be a miracle.....

Jenny

ritwren

I've read through all your pages thistlegirl and feel for you, you've been through so much. You sound like a very strong person and I'm just popping onto your thread to wish you good luck with your new plan for today.

Do try not to overdo things 'tho and try to build up to doing things.
Ritwren

Megrose489

Just wanting to wish you well, Jenny, both with your plans to get moving and with the upcoming scan.

I would echo what ritwren says - don't overdo things and make sure you pace yourself.

We're all thinking about you.

Meg x

stickywicket

thistlegirl wrote:

So tomorrow I am starting operation move your butt. I have moved my phone and alarm clock out of reach so I can't hit snooze til they give up. I have also set the washing machine to do a load first thing, the noise should wake me and I can't stand leaving a wash in the machine!

I love the concept. It's well planned and deserves success but don't be too hard on yourself if it doesn't go as smoothly as planned. You have so many imponderables here. I hope you managed to achieve some of your aims anyway.

thistlegirl

Hi, Thanks for the comments. I am trying not to rant on here too much, I am aware I haven't been so positive recently, finding it hard without any definitive answers from the docs. If the scans give me the all clear (which would be good) then I still need to know what the pain in my jaw and side are...I really wish I could switch my brain off til I know one way or the other.

Operation move yer butt update:
Well day 1 was ok, Up before lunch and washing hung. I did a wee bit of cooking then that was me wiped.....Also lost feeling in a couple of my toes for a while after standing for a while, no idea what that is about :roll:

day 2 has been not so good, just call me couch potato What is up with my shoulders at the moment?!?

day 3 I aim to make it to my sisters by lunch. I still have not been to the shops but my elves are going tomorrow for me

Hoping for a better day tomorrow, for all of us.

Jenny

ouchpotato

Jenny...you? Rant? I wouldn't ever say you rant, and even if you did you have more than enough to rant about! I think you are dealing with things brilliantly - you're a better woman than I would be.

All I would say is listen to your body...if you think you can manage something then do it, if not then don't...housework will still be there tomorrow (when I say that to my mum she always says that's what she's afraid of!!!). Just look after you.

Take care

x

kentishlady

Hi Jenny. Am so sorry to hear you are having yet another rough time. I do so hope you have good news from your scan. Please let us know when pocket duties are required.
Don't try and do too much. Be as kind to yourself as you can. Am sending lots of very gentle (((())))) to try and help you just a little.

Beryl

xx

ritwren

Glad to hear the elves are helping out with the shopping. Save your strength for doing things you really want to do and will enjoy.
Hope the lunch goes well.

stickywicket

You don't rant, Jenny, and I think you are very positive given all the question marks. It sounds as if 'the operation' made a good start too. The jaw pain? Arthritis? Many of us have it there.

thistlegirl

Sticky- I don't think it is arthur in my jaw, it is different, I think....

My shoulders on the other hand are active, they are locking up overnight and it is taking hours to get full movement back. My right side is better thankfully so I am using it to force the left arm to move, using some banned words at the same time. I feel like the top half of my arm in glued down to my body and even sitting up hurts as when I use my hands to push up the pain is bad.
My sleep is completely messed up, when I was sleeping well I was obviously not moving my arms so they work locked. Now the pain is waking me through the night so I am not completely locked in the morning but also no sleep. I can't get comfortable, I gave up last night and at 4am went though to the couch and watched TV, fell asleep after an hour and managed to get 4 hours sleep.

I get my scan on Tuesday but it is another week til I get the results, hopefully after that I can get this sorted, some steroid injections and/or medication? I don't know but can't return to work like this-Zombie again

I am going to dig out the stronger painkillers tonight, was enjoying being off them but think my time has run out on that front.

Jenny

stickywicket

I hope the meds helped. It's so much easier to deal with rubbishy days after a good night.

If it's not arthritis in the jaw I'm afraid I've no suggestions. As for the shoulders - I hate shoulders :roll: Twin nuisances. I have always been told by physios to take my joints, slowly and carefully, through their full range of movement every day even when flaring. of course I haven't :oops: but I do know the difference if I don't do the exercises for more than a few days. Owing to a nasty cold followed by Christmas away, I neglected mine for about a month and I'm still working my way back to where I was. It's complicated :roll:

I hope the scan does something to help - quickly.

Lubs

Hi Jenny,

I only recently read your thread here on the forum. I don't usually write on this one and tend to stay away, but you story and the way the others have been helping you is very endearing.

Arthritis in the jaw hurts under the ear and the pain sometimes radiates down the neck and can give you a terrible headache. You have a really good medical team I am sure they can tell you what is what.

Take care and keep up with the posts!
Lubs () x