Hmph!

So I finally relented and went to see the GP about the nasty acne on my back and he gave me antibiotics for it. Two months’ worth of nasty ones to be precise. And a steroid cream for the contact dermatitis on my finger that’s stopping me from wearing my wedding ring.

So now I feel sick. Damn drugs.

Aside from the annoying acne on my back and the irritating contact dermatitis, things are kind of ok. I have been very busy making Christmas cards, hence the recent absence, and only have one Christmas present left to buy. Still a lot of knitting to do though, so will have to get on with that shortly…

R is much better now, and we hope for more news on L at the end of next week, so maybe more info there in my next post.

Quite boring really…

The longest fortnight of my life…

… and I still can’t blog about why. *makes noise of frustration*

 

The fibro is really playing up, not only because of the stress of the last two weeks, but also because I have caught some kind of virus involving a sore throat, a cough and a cold. Lovely. I missed both the flu jab and the swine flu jab as a result (apparently you can’t have them if you’re ill already), so I just have to hope that this clears up before the next batch is delivered to the surgery, and that I don’t get this sodding swine flue in the meantime.

 

Being almost constantly ill and continually in pain is really dragging me down. I’m trying not to let it, and have been persisting in making my own Christmas cards, but it seems to be working its way through that. Hmph.

A long and stressful week

It really has been a long and stressful week – and I don’t mean because this blogging week includes two weekends!

 

I have a lot of family stuff going on at the moment, which is not very nice and shouldn’t ever have happened, but it has and we all just have to deal with it. Unfortunately, dealing with it brings with it a nasty fibro flare-up and very nasty acne on my back bad enough that It actually hurts to lean against anything or lie on my back (which I have been doing an awful lot in my sleep lately…) Fortunately, I think I’m over the worst of the flare-up now, but events tomorrow and at the beginning of December could well change that. Unfortunately, I am not at liberty to divulge any details at the present time, but I am sure all will become apparent (and probably public knowledge) in due course. Until that time, you’ll just have to take my word for it that things are not good. In fact, a lot worse than just “not good”. Bloody awful comes close, but I do not think any words can describe exactly what is going on with my family at the moment. Maybe I’ll try drawing something to represent how bad things are…

 

I have not slept properly for the last week, partly because of recent events, and partly because of the pain in my legs, which is worse than usual, but at least I have managed to get rid of the walking stick. My hands have been painful too, so I have not been able to cross stitch or knit for very long, but I have persevered and the pain in my hands has at least eased enough for me to cross stitch a bit more. The pain in my legs is not promising to ease up any time soon, so I have had to increase my pain meds for the time being. Hopefully that will help combat the pain that is starting in my shoulders and upper arms too…

 

Despite awful goings on, I am very happy with my home life and the wonderful relationship I have with my lovely husband. He truly is a godsend. Yesterday we went to the garden centre and bought quite a few beautiful plants for under £20 (that’s a total, not individual prices!) for our garden, including a buddleja, which I am quite excited about – it’s pink!! My lovely husband will be planting these out this week. I think the others we got were ivy and wall flowers, but I’m not too good with plants, so don’t hold me to that!

 

Anyway, the fibro-fog is starting to set in again now, so I will return next week with more updates. I’m sure this family stuff will sort itself out, so I’m trying not to worry about it. Too much.

Grrrrrrrr! (yes, I’m growling)

… and I’m not quite sure why!

 

The cross stitch and the knitting are going well, as I have finished two projects this week, but the fibro is still confusing me. I don’t know whether I’m coming or going and I’m stupidly being quiet about it so as not to upset hubby. I think this could be the start of a really nasty flare-up, but I could just be getting a cold or something….

 

Well, I must look on the bright side: at least I have finished two projects this week, kept my promise to update this blog, kept the other two blogs up to date AND installed the new release of Ubuntu!

Christmas in October

If you read my other blogs on WordPress and Blogger, you will already know that I have spent the last week or so knitting Christmas decorations for my Mum’s Soup-A-Bazaar (which used to be called a Soup Morning, something like a coffee morning but with soup!) to help her raise money for the Motor Neurone Disease Association (the Sarum and Pembroke Chapter of the Foresters’ nominated charity this year). You may also know already that I have over-done it, yet again, and made myself ill.

How clever of me.

Why can’t I learn my limitations and not exceed them? Why do I consistently try to do too much?

On another note, I have realised that I have been neglecting this blog somewhat, and so it isn’t really of any use to me for keeping track of my fibromyalgia. Therefore, I have decided to make a point of blogging every weekend, so that I get into the habit of blogging on a regular basis about the fibro and get used to documenting how I am coping and/or dealing with it.

I shouldn’t place any bets on this though, because I will probably forget before next weekend and wind up writing this same decision again at some point. I really should look into brushing up on my memory improving skills. I have completely forgotten this week to phone the Cat Protection League about the cat Penguinclaw and I want to adopt. Hopefully I will remember on Monday…

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I have been sat here, fingers poised above the keyboard, staring at the blinking cursor, for what feels like forever. Wondering what to write. Thinking about whether I should write at all. And then, as if by magic, my fingers started to move over the keys.

Today is the fifth anniversary of my Dad passing away following a heart attack that left him brain damaged. I cannot believe five years have passed since I spent an eternity in a side room on the A&E spill-0ver ward watching my father fade away and not even understand what was happening to him, or where he was… An eternity in that small room, stealing a few moments of sleep in an uncomfortable chair while Dad slept, knowing that he was going to die from this chemical pneumonia he had developed but not knowing when, how long he would continue to breathe in that broken way, how long I could bear to listen to it…

Five years.

So much has happened in those five years. I wonder what Dad would make of the woman I am now. I have got married, rekindled my love for cross stitching and knitting, lost my job through illness and found inner peace and true happiness.

I still miss him terribly. He was a wonderful man, a simple lorry driver who lived for the moment and loved life, food and a good beer and a laugh at the weekend. He only ever wanted happiness for his four children, and I am so glad that I have found this myself. But when will the grief at his passing finally fade? Why do I continue to have nightmares in which I am back in that tiny hospital room with no air? Why was he taken from me so soon?

Questions that may never be answered.

Today I am glad to have my husband, who is so lovely to me, and such a great help with the grief that I still suffer from.

Thank you, Jay. Without you, I would not exist.

30 things about my invisible illness you may not know

1. The invisible illness I live with is: fibromyalgia (FMS) and depression.

2. I was diagnosed with it in the year: 2002 or thereabouts – my memory is very poor :-/

3. But I had symptoms since: childhood. I remember pain from about the age of 10 or 11.

4. The biggest adjustment I’ve had to make is: learning how to pace myself and what my normal energy levels are.

5. Most people assume: I am making it up or I am lazy because I don’t look ill, or I’ll be limping on one leg and then change to the other. I am not pretending, it’s just that my pain has moved.

6. The hardest part about mornings are: waking up and getting out of bed. I suffer from quite a selection of sleeping disorders and the pain and stiffness creep back into my joints and muscles while I sleep.

7. My favourite medical TV show is: I used to watch ER but can’t watch any medical programmes since my Dad died. They bring back too many memories of the last few months of his life, which he spent in hospital.

8. A gadget I couldn’t live without is: double-curved scissors – they are a life-saver!

9. The hardest part about nights are: hmmm… so many to choose from… one of my many sleeping disorders (insomnia, early morning waking, talking in my sleep, frequent waking throughout the night, poor sleep quality, somnambulist activity) or being woken by pain… I think I’ll go with the latter.

10. Each day I take a number of strong pain killers and joint medication as well as inhalers and anti-depressants. I actually hate taking tablets, and always have.

11. Regarding alternative treatments I’m all for them, but wish that one, just one, would help my fibromyalgia for more than a few days.

12. If I had to choose between an invisible illness or visible I would choose: no illness at all, although I guess that’s cheating, so I think I would go for something a little more visible. Then again, I do have a serious knee problem and now walk with a stick…

13. Regarding working and career: I miss being a legal secretary. Unfortunately, I have been deemed “unfit” for work by the powers that be, and told by the doctors that I may never be fit enough to return to work.

14. People would be surprised to know: despite my usual sunny disposition, I am actually in a lot of pain most of the time, even though I take the strong pain killers. They are just to reduce it enough for me to be able to do things that others take for granted, like washing up or cooking dinner or getting in and out of the bath.

15. The hardest thing to accept about my new reality has been: not being able to work and the question mark over my ability to have children.

16. Something I never thought I could do with my illness that I did was: bring joy to others through my creativity.

17. The commercials about my illness: do they make adverts about fibromyalgia? I’d love to see one.

18. Something I really miss doing since I was diagnosed is: going out for a drink with friends without any worries. I don’t have many friends left.

19. It was really hard to have to give up: alcohol. I have never been an alcoholic, but I did enjoy a few drinks at the weekend.

20. A new hobby I have taken up since my diagnosis is: crafting! I actually have time to cross stitch, knit and make my own jewellery and cards!

21. If I could have one day of feeling normal again I would: what’s normal?

22. My illness has taught me: that people in general are judgemental and quite ignorant, and really don’t like to have their boats rocked by being told that the person they are talking too is ill.

23. Want to know a secret? One thing people say that gets under my skin is: but you don’t look ill…

24. But I love it when people: are pleased with the gift I have made especially for them.

25. My favourite motto, scripture, quote that gets me through tough times is: tomorrow is another day.

26. When someone is diagnosed I’d like to tell them: things I wasn’t told but should have been.

27. Something that has surprised me about living with an illness is: the differing opinions held by the medical profession.

28. The nicest thing someone did for me when I wasn’t feeling well was: my husband treats me like a goddess and makes me laugh. He’s lovely and I couldn’t live without him.

29. I’m involved with Invisible Illness Week because: it’s about time ignorance was dispelled and people became aware that illnesses are not always visible.

30. The fact that you read this list makes me feel: quite nervous, actually.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

But you don’t look ill…

Today is the start of a week-long online debate promoting the international awareness of invisible chronic illness, such as fibromyalgia and mental illness. This subject is extra close to my heart, as not only do I suffer from fibromyalgia, but my husband suffers from bipolar II disorder (a type of manic depression) and I also suffer from depression, and have done for more than half my life. I am so tired of having to explain to people the reason why I am unable to work even a few hours a week (when I used to work an average of 75 hours a week) and why, although I look healthy, I am actually in severe pain most of the day, being woken with pain several times during the night. I am also tired of trying to explain to people that depression is not a made-up illness or an excuse for people to be lazy, but can be quite debilitating in itself, especially during particularly low periods when it is hard to see a way out.

I am glad that there is a group trying to raise awareness of these illnesses, not just because it means I shouldn’t have to keep explaining myself so much, but because people should be aware and not be so judgemental all the time. A few kind words from someone you don’t know can be so uplifting.

I have recently had to read a lot about bipolar II disorder, as my husband has recently been diagnosed. During my research into it to find out if I could do anything to help him, I found myself relating to a lot of the information myself, which left me feeling quite disturbed and low and questioning myself. I don’t mean to say that I now think I also have bipolar II disorder, but that I think I may be suffering from a different type of depression to that which I have been diagnosed with. Now I face yet another dilmma; do I go to the doctor with this new-found insight, or do I leave sleeping dogs lie and carry on as I was? Would a change of diagnosis actually achieve anything?

I shall ponder these questions while I update my other blog and cross stitch some more.

12 things to note about fibromyalgia

1)   You cannot tell if someone has fibromyalgia just by looking at them.

2)   Diagnosis is a long-winded process of elimination. It cannot be detected by blood tests or X-rays or any other scans or tests you can think of.

3)   Everybody who suffers from fibromyalgia does so in a different way; no two people suffer from the same symptoms, nor at the same degree.

4)   Fibromyalgia does not respond well to stress.

5)   If I can’t remember what I’m saying, or I get my words muddled up, I’m not stupid, just suffering from “fibrofog”.

6)   If you see me limping on one leg and then on the other, I’m not making it up, it’s just that my pain has moved. It does that.

7)   Cross stitch, knitting and other crafts can actually help me manage my pain levels.

8)   I am in pain most of the time, even though I take quite strong pain killers which cause nasty side effects.

9)   Although it is me who suffers from the condition, my family also have to cope with this, especially my husband, who is also my carer.

10)  Although I may go to sleep every night, I don’t necessarily get good quality deep sleep, and so sometimes I may feel as though I haven’t had any sleep at all.

11)  I am not lazy, just ill.

12)  I am still a human being with feelings and emotions, even though I feel more pain than most people.

Family – who’d have ‘em?!

Today has not been too bad a day, except for the persistent headache. I had a fight with my sister the day before yesterday and she said some cruel things (via text message because she was at work at the time), which really upset me, leaving me unable to concentrate on larger cross stitch patterns and unable to knit my Jaywalker socks because my hands hurt so much. So I started to cross stitch Christmas cards because I didn’t know what else to do with myself.

Why am I so upset about this? She is my sister and she basically called me a lazy bludger, knowing that I would do anything to return to my last job as a legal secretary, a job I really loved, and that I am in pain most of the time. Am I wrong? Should I just forget about it and move on? Or should I sit and wait for an apology which might never materialise?

Now I have a problem. Do I try to sort this out with my sister (she is, after all, my sister)? Or should I carry on and tell her the few home truths I’ve been dying to tell her for ages but haven’t had the courage and not wanted to rock the boat? She definitely needs to be put straight on a couple of things either way. Maybe I should write her a letter? That way, I can say what needs to be said without loosing my nerve and without getting flustered and messing it up, and also make sure that I let her know that I don’t want the animosity to continue. Yes, maybe that’s the best idea. Of course, I’ll have to explain why I’m writing in stead of visiting or phoning.

I think I’ll sleep on it. Again. Maybe tomorrow will bring me the answer.