October 24, 2009

Needing to have a rant …

My health is shit. My skin is falling off. My face is a scabby mess. Both my eyes are gunky and infected – I can barely see. I’m in agony. I’m exhausted.

So, every morning I wake up ridiculously early after a bad night’s sleep and go to work.

I’m doing mind-numbingly boring work. I’m not being allowed to develop in my role. The project I’m part of is probably winding up soon so my future is up in the air.

Then I go home in the evening.

Men confuse me. There’s someone. He seems to like me. I definitely like him. We get on well. We flirt. We have deep and meaningful conversations. Hot. Cold. Hot. Cold …. So confused.

October 18, 2009

Need to write this down and get rid of it.

I’m in a lot of pain, I’m very tired (not sleeping because of pain and/or codeine-based pain medication), my concentration is rubbish because of tiredness and painkillers ….

My boss is lovely He took me aside on Friday to say he’d noticed I’d been quiet and to ask if I was okay … I nearly cried because he was being so nice about everything and saying that my health was more important than work. The problem is that he noticed. I’m doing my job slowly and badly.

He’s knows I’m not well, but I don’t think he knows exactly what’s wrong with me. I knows I take lots of pills, that I’m in pain and that I’m not sleeping at the moment.

It took me 9 hours to do about 4 hours work on Friday because my brain just wasn’t functioning. I had to keep asking for even really basic things to be explained to me. I felt so useless.

The irony is that on Wednesday, my GP offered to sign me off work and I said no. I’m still in my probabation period at work and even having one day off for a stomach bug was frowned upon (not sure how this fits with boss saying my health should be my priority).

I started the job in July. It’s full time and this is the longest I’ve done a full time job since I got pemphigus. Most of the work since diagnosis has been part time and/or casual, unfortunately I just can’t afford to be part time anymore.

I’m feeling so crap at the moment, mentally and physically.

Bits + pieces August 14, 2009

Had a crap day. Blisters are back. Feel like an ill person.

I made a very small mistake at work and feel disproportionately bad about it. New job has been okay, but today was rubbish. I feel like I got nothing done. I got lumbered with lots of little things and didn’t get to focus on anything for any length of time. I was in early, had a very short lunch, then as I was leaving 30 minutes early someone made a crack about me going early … so today was crap.

Very excited that Paperchase is opening a store in Aberdeen … I do like stationery.

Currently taking 20mg pred and 50mg azathioprine (should be 150mg, but I got worried when the pig flu was going around the office).

Was at a lovely wedding last weekend, but it involved a ot of travelling and two nights away, so I didn’t feel rested on Monday. Will try to make the most of this weekend and catch up on my rest. I get so tired.

Am very overdue for blood tests, but work makes it so difficult since they can only be done in the mornings and I have to be in at work by 9am.

May 26, 2009

Update, update, update.

Now taking azathioprine and prednisolone and slapping on protopic ointment, betnovate lotion and eumovate.

Tired beyond belief, very itchy, very fat, very emotional. Gotta love them side effects.

Unemployed, but with two job offers (one at the library for the summer, the other with the DWP), both dependent on references and disclosure.

Worried about cat number 1 (Boo), she’s old and her behaviour is changing quite rapidly … she’s lethargic, she can barely get up the stairs and she’s not eating much. I love her so much.

At the beginning of the year a blue-grey cat started turning up at the house and made himself at home. He’s a friendly thing, but has an evil twinkle in his eye. Anyway, we’ve decided he’s ours … he’s called Fester.

Dolly and Jet are both as lovely and as dim as ever. I love my animals.

February 28, 2009

I’ve had a crappy few months.  I’m out of a job at the end of March because the Council can’t count/doesn’t like books/needs to buy lots of Blackberries (or something like that), my Gran died, my Gran stuck the boot in to my mother one final time by cutting her out of her will, my pemphie is creeping back, money is tight, I’m depressed … blah.

I’m going to have yet another consultant.  I’d managed to see the same doctor more than once (!!!), but clearly the hospital realised their mistake and have sent him off to do something else.  There seems to be no hope for consistency of care with NHS Grampian.

My pemphie flaring up may be in part my fault.  I have stopped taking my Dapsone.  It was making my heart ‘fluttery’ and it was scaring me.  So now bits of me are falling off, but my heart feels normal.

Work at the library has been okay.  I started at the beginning of December.  The borrowers tend to be either very nice or rather rude, there’s not much in between.  Also, it has made me even more sure that branch libraries benefit enormously from having senior library assistants or librarians who are very involved in the branch.

November 26, 2008

Love this:

Muppet whatnot workshop

November 23, 2008

It’s almost Christmas!  Yes, I am one of those people who starts getting ready for Christmas super early.  I just love it.  It’s the best time of the year … and not only because I get to shop without feeling (too) guilty.  I’m trying to ‘buy handmade’ this year, at least more so than I have done in the past.  I’m making the most of Etsy and its loveliness.

I’ve got a new job.  I’ve not started it yet; I have to wait for my Disclosure to come through.

In the build up to my interview for the job I didn’t think I was stressed, but I must have been – my pemphie flared up the day after the interview and now I can’t get it under control.  On top of the pain and discomfort of the pemphie, I have a persistent dry cough.  I’ve had the cough for about two months and I just can’t shake it.  I’ve been to see my GP who could find nothing wrong, but said it might possibly be a form of whooping cough (I don’t have the characteristic ‘whoop’ so I doubt it).  He’s given me antibiotics, but they’re doing nothing.  I’m feeling a bit crap.  My health sucks at the moment.

I didn’t go to work today, because of the snow.  I got up at my usual time of 6.30am and between then and 11am the road wasn’t ploughed once.  I felt guilty phoning in to say I couldn’t make it in, but I felt relieved too.  Work tires me, and Saturdays are especially bad.  I do miss the pred-related highs.

Best news in ages September 11, 2008

Rentaghost ‘to make TV comeback’

September 9, 2008

I’ve been on Dapsone (along with Pred) for several weeks now, and it really isn’t working for me.  Plus I’m feeling even more tired and ‘blah’ than normal.  I’ve also had a bit of a funny tummy, blue lips and a racing heart on the Dapsone.  Not nice.

My next hospital appointment is October 16th and I’m thinking about asking if I can stop taking the Dapsone and just try reducing the Pred.  If I’m getting blisters anyway, then I might be better getting blisters and be on as few drugs as possible.  At least there would be somewhere to go with the meds then.

I feel so tired all the time right now.  I’m quite glad that I’m not working full time at the moment.  I was barely coping over the Summer – not that I would have said anything to my bosses – you just have to knuckle down and do it … then collapse when you get home.

I’m having no luck with job hunting (which is maybe just as well).

July 20, 2008

You’d think that no news would be good news, but alas no.  The infusions I had back in April failed.  I was blister-free for a couple of months, but that was not necessarily due to the infusions, could have just been the daily, oral prednisolone.

Anyway, two weeks ago I had a major flare up after I got a nasty stomach bug and my prednisolone had to go from 7mg to 40mg every day.

This morning I had a outpatient appointment at the dermatology clinic.  Another appointment, another doctor.  No explanation of what has become of my previous consultant.  My new consultant has taken me off the Cellcept (mycophenolate mofetil) and as soon as I can get my prescription filled, I will be starting on Dapsone.

I’ve had a bit of a read up on Dapsone, and I’m not all that impressed.  There doesn’t seem to be much evidence to support its use in cases of Pemphigus Foliaceous.

I also finally asked about whether I should be having bone density scans (because of the level and length of time I’ve been on the prednisolone), and apparently, apart from being a woman I have none of the risk factors … hmm, and here was me thinking that prednisolone itself was a risk factor!  So, I’m not getting bone scans.  I’m actually tempted to look into getting one done privately, just to put my mind at ease.

Other than the pemphie, I’ve started my summer job at the library.  Full time hours are taking their toll on me and I’m feeling very tired all the time.

I bought and read a book called Women, Work, and Autoimmune Disease: Keep Working, Girlfriend! by Rosalind Joffe and Joan Friedlander.  It’s not great.  I wanted practical advice that was relevant to me.  There are lots of little case studies which I couldn’t relate to.  I don’t have the option of flexible working hours, or asking someone else to do my work, or self-employment.  It was quite a superficial book that didn’t really tell me anything new or relevant.  It was a good idea, and may be relevant to many women with autoimmune diseases.  Also, I hated the ‘girlfriend’ bits – how horribly American and crass.

On the subject of books: I’ve been ‘doing’ the Richard and Judy Summer Read.  I’ve decided to stop being a snob and to actually read stuff that people ask about in the library.  So far the books have been okay.

I liked The Outcast by Sadie Jones (25/06/08) book, it reminded me of Atonement-lite, and as such I found it much more accessible and enjoyable (I just couldn’t get into Atonement, though I thoroughly enjoyed the film).  The self-injury in the book seem such a modern aspect to the story, but it nevertheless didn’t jar with the rest of the story.

I was much less keen on No Time For Goodbye by Linwood Barclay (02/07/08).  It was like a million other thrillers.  Nothing to make it standout.  The twist – oh, yes a twist – wasn’t even that cleverly done.  Perfectly readable, I suspect it will be one of the more popular ones from this summer’s book club, because it’s so straightforward (ugh, I really am a snob).

I’m currently reading East Of The Sun by Julia Gregson.  It’s absolutely not my normal sort of book – it’s the sort of book that I would associate with older women who like a Maeve Binchy / family-saga type of book.  It’s alright though.  It’s well written (actually, I believe the author is a former model which makes it all the more impressive – they are supposed to be stoopid, clotheshorses, not talented authors!), the detail is impressive and the characters likeable.  There’s a tiny bit of darkness under the surface with the bubbling unrest of ‘colonial’ India as the backdrop.

The second thriller on the list is this past week’s book, Down River by John Hart (16/07/08).  Much better than No Time For Goodbye.  All the blurbs and comments seem to say ‘Chandleresque’ and I’d have to echo that.  It’s noir-ish and different.  Again it has twists, but this time they are clever and keep the reader guessing.  I did guess the ending, at least in part, but I think what that shows is that it wasn’t plucked from nowhere – it made sense and with hindsight, looking back at the clues through the book the ending was believable.  It was the third of the first four books to feature self-injury (East of the Sun being the second) … an interesting theme for a tea-time, mainstream, warm and fuzzy, telly reading club!

Four more books to go.