Well the job centre was interesting. Very public and very humiliating. It seems my employment support allowance will run out in March, and then I get nothing as I have more than £16000 in savings. I can (and will) apply for PIP payments which are non means tested, but will not be nearly enough to be able to manage on. I know I should be grateful I have savings, but somehow, having worked all my life and paid  all my dues, I foolishly thought the savings might make my old age more comfortable. As always,the harder you work, the less you get, the less you work, the more you get......something has to be wrong somewhere or is it me? Not entitled to a bean until savings are used up. Am feeling so thrilled that this bloody disease decided to join me for the rest of my life, we can grow old and poor together.
Bloods still out of normal range, for repeat Friday, Hosp next Monday. Weight out of control, all mirrors in the house banned.

Haven't written this for weeks! I lost my job on 11th August as expected due to this pain in the arse illness. They couldn't have been nicer about it and said they would be happy to re employ in the future (if I'm ever capable again), so I guess I can't complain. I'm going to anyway. I am sick and tired of this condition.I'm sick of all the tablets...immunosuppressants to calm/control the immune response, steroids to help that, omeprazole to protect my tummy from steroid damage, calcium and alendronic acid to protect bones from steroid damage and potassium to reduce cramp caused by steroids.Then theres the daily ritual of E45 and eurax cream to try and calm my skin(caused by the steroids) and special shampoo/ conditioner to reduce hair loss(caused by the Azathioprine).Oh and of course, making sure I eat at regular times and take a full glass of water with evening meals and Azathioprine to reduce the risk of nausea at night. Then theres the weekly ritual of having to wake early to take the alendronic acid before anything else with a full glass of water, remain upright for one hour to prevent burning my oesophagus. Forgive me, but I like a cup of tea within minutes of waking, not keen on trying to stay awake whilst upright for an hour before I can do anything else.My life is ruled by this condition and there is no escape from it. Bloods  were in the safe area for a whole total of about 6 weeks. They are now climbing again and I've just started the whole bloody merry go round for the 3rd time. Steroids have been increased again and so back to frequent blood tests. If I'm grateful for anything, its that I didn't go back to work, because if I had, I would be off sick again after only 1 month. I never even got to feeling less tired/confused/achy etc before its gone wrong again. So, to pracey, I'm still miserable, itching all over, fat, spotty, achy,have thinning (but now short) hair, and have no sustainable energy. I hate looking in the mirror and all clothes are uncomfortable.Every day is a struggle and a challenge that most days i don't want to take on.
For a bit of variety from all the medical appointments, I now have a letter asking me to attend the job centre to discuss ways of helping me back into work.....what bit of I'M SICK don't they get??? Presumably sick notes from the GP and letters from consultantts and a P45 saying  I've been terminated from my contract on the grounds of capability due to ill health isn't quite clear enough for them.

Today I had a meeting with my manager and human resources. The bottom line is, I am no longer capable of fulfilling my role as a primary care dementia practitioner. This is a role I had longed for, and was enjoying immensely. I am so disappointed. It wouldn't be so bad if I was no good in the role, the problem is that I was, and it gave me great satisfaction to work so closely with those living with dementia, and those families/agencies/surgeries who are supporting them in their homes. I have tried everything I can think of over the past year (I first went sick last August) to get myself back to a normal level of functioning. I have no more weapons left in my armoury. A further meeting will be held on August 11th where my contract will be terminated. My manager has been brilliant, she could not have been more supportive, but I can't fulfill my role when I have constant "steroid brain fog", or feel tired all the time. I don't even feel I look presentable anymore. My skin is itching and rashy, my hair is falling out, and I have spider nevi on my face and neck. I have also gained a stone and a half since all this started. I know it can take between 18 months and 3 years to reach remission, and whilst I am pretty much biochemically in remission, clinical remission seems a long way off. I have no choice but to give in to this and just accept that what will be will be.
The good news is, I saw the eye hospital last week, and whilst I still have raised pressure in my eyes, there is no sign of damage to the optic nerve, so no treatment needed.....yet. I have also seen the dematologist, but due to brain fog, can't remember what she said was wrong with my skin, but it's benign and needs no treatment, just stay out of the sun. Due for bloods next week and hep clinic afterwards.

The reason I haven't posted for a few weeks!

I've been busy helping to hand rear 5 puppies over the last 2-3 weeks. Their mother became very ill during labour, had to have a c section and blood transfusion, and was so ill she was unable to be with/feed her pups. So it's been 2-3 hrly feeding/sterilising bottles/washing......general mayhem in our house since then. They are gorgeous, but we are now beginning to resemble zombies. Next week should be even more fun when they start to be weaned! All this whilst we have 5 dogs of our own and a petcare business to run.  I guess its no surprise that I'm VERY tired and aching all over. I am still having a nap in the afternoon, but the last few days I seem to be hitting a brick wall with exhaustion. My joints ache constantly, and my skin is still driving me mad. I only seem to be able to manage for a few hours at a time, then have to rest. I'm also much slower than I used to be before . I have constant brain fog, and keep forgetting things, and sometimes just can't get the right words out. Steroids have a lot to answer for. I can't seem to stop moaning all the time about how I feel, just wish I could be more positive, but it's really hard when every morning is such a struggle and you feel like you're wading through treacle just to get washed and dressed, never mind doing anything else.

Seen by Proff Cramp today. Pred to stay at 12.5mg for another 3 weeks, then reduce to 10mg.Azathioprine to stay at 75mg. Don't have to go back to clinic (or have bloods done!) for 6 weeks. Everything stable biochemically, so he's happy that things are finally settling. The price to pay however, is all the side effects, which I have to say, I find debilitating. I'm still needing to have bed rest each day, and find I ache constantly and have no stamina. If I push myself and do too much, I have to pay for it for days afterwards. My skin is still a problem, but if I take antihistamines I just fall asleep! I am now finally accepting that this is with me for life, and I will never be my old self again. I will not be well enough to return to my job next month. To perform my role effectively, I need to be able to manage to juggle far more balls than I currently can. It's not just about staying awake/mobile for 4 hrs a day, it requires much more, and I know I just cannot do it.

Alice and Bobbie the donkeys (for Jo)!

Alice is the grey one (10yrs) and Bobbie is her daughter (6yrs). Alice is sporting a liberal covering of sudocrem for treatment of rain scald which she had earlier this year!

This is what you look/feel like when you eat too much spring grass in one go..............or did Kaspar steal my steroids??!!
Things going ok except for intolerable itching. This only started about 2 weeks ago, and is largely on my forearms, but also neck/trunk. Not sure if it's to do with increased Aza? Or photo sensitivity from the aza? Colleen suggested eurax cream, which is brilliant, but would like to know the cause, and why now if its the aza? Had been using factor 30 on anything exposed from the minute the sun came through a few weeks ago. Come on Jo...........you always have the answers!!!