Busy Day

I've had a busy day and now I'm tired. First I took our dog for a walk for about 20 minutes. Then I went on the bus to town and bought some greeting cards for upcoming birthdays, anniversaries and retirement. Then I had my hair coloured and cut which took 3 hours. After that I went into a big clothes shop and picked out lots of dresses to try on. I bought 4 outfits and my son approves so I'm ready for this sunny weather. I travelled on the bus to home. It seemed like a very long, bumpy ride! I ironed 6 shirts. All very tiring and I had to take extra paracetamol and have a lie down.

I wanted to have my hair done because I am meeting my new class on Wednesday and that's why I felt I wanted some new clothes too. I have now forgotten everything I was going to write....!

I woke up this morning feeling odd - I can't describe or explain what I was feeling. I wasn't particularly in any more pain but I just felt odd - down maybe, a bit forgotten maybe - I don't know.

Any way I gave my son a lift to school because I was awake and he had a lot to carry and it was trying to rain. I had a big, warm, bubbly bath and then I lay down and did a 25 minute full body scan. My physiotherapist recorded himself taking us through this and then emailed the file. It's the first time I've used it. It worked well and I was pleased that I felt I focussed on each part of my body and didn't allow thoughts or anything else to distract me. I felt better once I 'd finished so then I did 25 minutes of mindful stretching exercises and felt even better.

I am learning. I have to do these things; they are part of my new life living with CRPS that is spreading. When my alarm went off to remind me to take my tablets and to do some mindful breathing - I did both straight away. They are important. I have to make sure they are important like other things are important to other people and I wouldn't question that at all whatsoever. I am important and so are the things that are part of my new life.

No post yesterday!

Well, that's disappointing, I didn't post yesterday - how did that happen?!
I had an appointment at Occupational Health yesterday - a bit depressing. And it said clearly on the referral form Complex Regional Pain Syndrome so guess what?! I had to explain it to her as she'd never heard of it. Surprise, surprise! She could have at least searched it before she saw me. I'm very interested to read her report.
I ironed 5 shirts and hung the washing on the line. I vacuumed the rug. I had a visitor today - how lovely; a lady from work. She was genuinely interested in CRPS. We chatted for 2 hours! She is returning to work next week having been absent for 5 months after being treated for breast cancer. It was good to speak to someone who understands how I'm missing work, feeling so tired, popping pills, learning to put yourself first at least some of the time.
I said CRPS is not life threatening and she replied immediately - maybe not but it is life changing! She's so right.
When I get the report from Occupational Health I'll speak to my Head Teacher and negotiate a solution to make sure I have equality at work. My knowledge and skills are not disabled and I can still do my job to a high standard. My reasonable adjustments are regarding the physical side of my job.

CRPS Spreads

I had it confirmed today that my CRPS has spread. My new symptoms are left side chest pain which sometimes shoots down my left arm to meet the pain shooting up my left arm from my hand! Also dizziness (pre syncope) and breathlessness (respiratory). I've been signed off work until 3rd September 2013. I was quite relieved when the doctor said that because I kept trying to figure out when I could return to work and now I can relax a bit. I have a reasonable amount of time to get myself into a new routine to cope with the pain.

I don't want to increase medication at the moment, I'm saving that if there comes a time when I can't cope. I try to do mindful breathing for 5 minutes 3 times a day and mindful stretching exercises for 25 minutes every day. These are my achievements with CRPS. They really do help with the pain and coping.

I drove to the doctors and back; I didn't wake up until 8.30am! I've nearly finished 29 school reports; I went for a walk round the block with my husband and our dog for 20 minutes; I hung the washing on the line and then had to get it all back in because it decided to pour with rain! Quite a good day with CRPS!

Eureka! I worked out how to change the time on my CRPS blog..my first achievement with CRPS today!
Yesterday it was an achievement to get up and dressed. I hung some washing on the line and it all dried. I wrote 10 Personal Comments. That was yesterday - not a good day - paid for Monday's excursion on the bus. Ached from head to toe, couldn't wait for my next lot of meds. Didn't do exercises or breathing - I think I should have forced myself; must try harder. I did talk on the 'phone to my Mother-In-Law, my Dad and twice to my Sister so they're all achievements - it's very tiring so actually I'm pleased about that. See, writing this blog for CRPS is good for me because as I'm writing I'm remembering achievements; all the better to make you feel better. By 6pm and penultimate dose of tablets I started to feel a bit better. I was asleep by 9pm!

Up early this morning:- changed the time clock on here. I'll drive my son to school as he has a lot to carry this morning. And then we'll see what I can achieve today...

Ok. Yesterday's achievements:
Took a bus to the hospital to support my mum with her appointment. She was a bit surprised how slow I was walking! We didn't have to wait long and her consultant was very patient with her. There were plenty of opportunities to sit down. we had a good chat and then walked to the bus stop together.
Her bus came straight away. I waited for mine and started to feel a bit unwell. I then realised it was school finishing time - the bus could potentially get very crowded and my husband was probably picking up my son so no point calling him to come and get me. So the bus came and I felt worse and worse as it bumped along seeming to take forever. It had to stop at every stop to let people get on and off...should I get off and call my husband? I sat there thinking I will get home on this bus, just sit and brave it out.
So I achieved going out yesterday but paid for it..
The end to the day was sitting in a chair and an early night.

I'll be back later for today's achievements...
PS ignore the time of this post - it's 8 hours wrong and I'll have to try to work out how to change it..

I spent ages looking at other peoples' blogs and different websites about CRPS. It really is amazing how much has been added since last time I did a similar search. I won't write much again because my hands are hurting, I should really use my Dragon (Naturally Speaking software for changing speech into text) which is brilliant and saves me having to type.

Achievements with CRPS since my post this morning?
I washed my hair and sort of dried it - always a struggle! It feels better though..
I've done 25 minutes mindful stretches.
erm... well it is only halfway through the day!

Ok it's pretty early on a Sunday and I've already been awake a while.
I'm on here already because when I woke up (too early!) I was excited about my blog! I Googled it on my 'phone and saw the crazy URL I'd used to set it up. I decided I needed to change it so I found out how to do that and changed it (not easy because lots of names have already gone). Then I Googled it again and it said it was no longer available. Oh no! What had I done...but don't panic yet. The helpful Help page said it might take a while for search engines to recognise a change of name...so I'll keep checking the progress. What is exciting is that now I have a URL that I can put into the address bar and there's my blog - just like a real website!

Haha! Easily impressed!!

So that's my first achievement with CRPS today :-)

Also I accidentally found another blog called Elle and the Auto Gnome http://elleandtheautognome.wordpress.com/
Living life and sharing the word on CRPS, Dysautonomia & Hypermobility

What a great site! so my new ambition is to emulate Elle because it looks amazing and I want something that looks half as good. I love the way she is so positive. And I like the way she writes.

That's it for now...you never know I might be back later today when I've achieved something else.
Today feels like one of those days when getting out of bed with CRPS is going to be an achievement!

Making a Start

Well, here I am then; making a start!

I was diagnosed with Complex Regional Pain Syndrome (CRPS)  19 months ago. It has been an eventful journey to say the least! But I won't bore you with that now.

You may have stumbled across my blog while searching for information about CRPS, in which case welcome. I'm guessing you or someone you know has been recently diagnosed with CRPS and are looking for clues! I know when CRPS was first mentioned to me I was searching like mad. I followed so many links to see what on earth this thing called Complex Regional Pain Syndrome was all about. Some of it was useful, some of it was horrific! That's the internet for you; it's like a huge cauldron of words and pictures for you to delve into but you've got to make sure you've got your "what do I need to know right now" glasses on.

So, you've been diagnosed with CRPS? Be positive, be realistic, try not to judge yourself, it's not your fault, it's nothing you did, it's not all in your head but you will have to explain CRPS a hundred million times! There's new research being published all the time so keep searching, be proactive and keep spreading the word - awareness is key.

So why am I entering the world of blogging? It's very simple actually...as part of my "treatment" it has been suggested that I record all my achievements; hence the name of my blog. So here goes:

Today I cleaned the toilet! Now that might not sound like much of an achievement and certainly not one you'd post online! Well for me it is. I'm really pleased with myself. I gave it a good scrub! It looks lovely and sparkling now - not that anyone else is going to notice, but hey, I'm not judging. I know I did it and I can admire it!

I also talked for 4 hours, well I actually listened a lot, with my sister. I love my sister. She visited me today and discovered a new route that wasn't half as tedious or tiring, great news! We did my mindful breathing together, she loved it and found it very relaxing, as do I. His voice is sooo calming. Must remember to email her the file so she can put it on her 'phone too. (I love my smartphone, it has revolutionised my life!) Mindful breathing really helps when you've got CRPS and I try to do it for 5 minutes at least 3 times a day.

Then we watched my mindful exercises DVD and did a few together - if you can feel the stretch then it must be doing some good. Again, lovely voice and sooo relaxing. I try to do 25 minutes every day.

And I started my very own blog...
That's quite enough for one day!