A new thing to add to my list

Today, I had my finger nails and my toe nails shaped and polished at the beauty salon. Lovely. My finger nails had grown so much in such a short time - part of the syndrome - either brittle and breaking or growing manically. And I have such difficulty doing them myself and as I have no daughters to do them for me. It's the first time I've ever had my toe nails done but it was so lovely and they look pretty now. Added that to my list of 50 new things to do before I'm 50 years old. So cheered me up. The weather's not cheering me up - raining all day. It's supposed to be really hot on Thursday. British weather!
I did my 25 minutes mindful stretching exercises this morning - they really do get me up and going every day. And because they're mindful they are having a good effect on my mood too. My hand has been really painful for a few days now - like electricity running through continuously. My chest has been less painful though.

Yesterday I did 25 minutes mindful stretching exercises and took the dog for a 20 minutes walk as fast as I could walk. Hubby drove me to town where we went to the bank, the chemist and the beauty salon. We walked back to the car. I did dome more planning for September and read quite a lot of the new national curriculum final draft. There is a handy glossary of terms in the English section. Thankfully nothing new to me but I think it will be very useful to some of my colleagues. I did some more work on the maths task. Restless legs - went to sleep at 9pm.

The Weekend

Yesterday I did my 25 minutes mindful stretching exercises before I drove to see my Dad, and my Mum was home from her jaunt. I chatted to them for nearly 2 hours and then visited my sister and chatted for another 2 hours. I then drove home and started my maths task. I couldn't really concentrate and that was making it so much more difficult.
I looked at some planning for next year and produced 2 weekly plans already. I also started to look at our overview for Literacy. I stopped this when I realised I needed to refer to the new curriculum to make sure the overview is relevant and up to date. So I stopped, put the laptop away and watched a bit of TV before going to bed.


Today I started with 25 minutes mindful stretching exercises. We then went to the retail park, my husband drove. We walked around 3 large stores and then drove to the regional shopping centre. Here we walked around 5 shops and hubby bought the trainers he wanted. It was getting busy so we decided to go to our local shops to sit down and have a drink and pick up a couple of bits of food from M & S.
All this was quite tiring so I sat down when we got home. Later I got the laptop out and checked emails, started my maths task which I'm pleased with how far I've got and now I'm writing my blog. I've sorted through a pile of papers and filed, recycled and shredded.

Tired now and my hand and arm are full of electricity, as indeed is the left side of my chest.

WooHoo!

Had the most fantastic weekend with my sister. And it was a huge achievement - loads of achievements:-

1. Travelled by train all the way to Hastings which included walking up and down several lots of stairs, being among crowds, walking in between stations (we had to use 4 trains).
2. We had to find our hotel which involved thinking and walking.
3. We were too early to check in so we found a cute bistro called Bullet to have a delicious lunch.
4. We walked up and down the seafront, sitting every so often when we needed to.
5. We travelled in the East Hill Lift up to the country park to admire the wonderful view. We travelled down in the lift. (there were stairs - eek! exhausting)
6. We checked in and then walked to the Italiano restaurant to have dinner.
7. We walked back. I don't know how far we walked on Saturday but it seemed a lot. Perhaps I need a pedometer so I know in future how far I've walked so I can make comparisons.
8. Woken too early by noisy guests! Up, dressed and out to find breakfast.
9. We didn't have to walk too far to find Pam's café with lots of choice for breakfast.
10. We then found deckchairs piled up on the beach, so we took one each and carried it towards the sea. Again we didn't have to walk too far before we found a good spot and sat down.
11. We did our exercises.
12. We sat and chatted for hours.
13. We then paddled in the sea before we filled our water bottles and walked towards the Seagull restaurant where we had a scrumptious lunch.
14. We then found the Old Town - a cute selection of little individual shops.
15. We then had to ask which way to the train station! We walked there and didn't have to wait too long.
16. 4 trains later, hubby picked me up at the station and I was home.

Brilliant!
I forgot to say we had a drink in a pub with masses of flowers in hanging baskets...can't remember the name of it, and worked on my letter to children and worse case scenarios as well! on Saturday and then on Sunday we talked about Springboard and did some of the activities.

I had a quiet day today! Still did 2 loads of washing and hung it out to dry, and then enjoyed the sunshine.

One of those days

Yesterday was one of those days. I try not to call them good days and bad days because that implies positivity and negativity. So yesterday, I did my mindful stretching exercises as soon as I was up and dressed. I then drove to the Medical Centre. I want to go to school in the Summer holiday to move classroom and set up my new classroom. My employer says they need something in writing from the doctor saying I'm fit to do this even though I intend to sit on a chair and direct my helpers! The receptionist said I probably need a fit for work certificate and I need to see the GP. The first appointment she could offer me is for Monday 22nd July at 5pm. This means I will already have lost a day and school is only open until Friday 26th July. But it is open again Tuesday 27th August so I suppose I could go in then if I run out of time at the beginning. The thing is, I want to limit the time I spend there otherwise I will get too tired which sometimes means more pain.

I'll 'phone the Medical Centre and see if I can pick up a cancellation any earlier than the 22nd. I've an exciting opportunity to work on the new Maths Curriculum on Friday 26th July so I won't be available that day. So after I'd finished speaking to the receptionist I picked up my prescription from the chemist. I dropped everything on the floor in the chemist and I wasn't flustered or embarrassed so that is another achievement for me. I calmly picked up everything and slowly walked back to the car.

When I got home I did  a mindful full body scan and some mindful breathing. I relaxed in the chair in the sunshine. I spent most of the day resting or mindfully exercising and breathing. In the evening I accompanied my son to a presentation event where he was awarded Players' Player which we are both very proud of. It means his peers voted for him which is a great compliment and they said some really nice things about him and why they had voted for him. I drove there and back and then was really pleased to be in bed asleep.

I'm awake early but feel ok. Today I am travelling to Hastings with my sister on the trains. We are spending some quality time together. I'm sure we will talk and not stop talking for the whole weekend! And it should be sunny weather too - bonus! I won't write anymore this weekend because we are travelling very light and I'm not taking any means to blog. I might write some things on paper so I'll transfer that on Monday. I am taking my Springboard book so that we can compare notes and talk about some of the ideas and activities. So I'll be back on Monday with all the news from the weekend...
PS I've started writing an information sheet aimed at children to explain my syndrome, how it affects me and how they can help. I'll be working on that at the weekend too with the input from my sister. We will also compile a list of worse case scenarios for work ready for my meeting with my Head regarding a risk assessment of me at work.

Another Busy Day

So, yesterday I was up, dressed, done all my mindful exercises and out of the front door by 8.30am. Number one achievement.
I had a lift to school so that I could watch the Leavers Concert. It's the first time I've been to school since I left in an ambulance with a suspected heart attack. Person after person hugged and greeted me with smiles and compliments. As I walked into the hall all the children waved at me and smiled and greeted me, it was lovely - all those smiley faces so pleased to see me.
I laughed and cried my way through the concert and it was really quite emotionally tiring. I then collected my new class for September and spent approximately an hour with them, asking and answering questions and learning about them. I'm very excited about September.
I then went to the staffroom and there were even more people happy to see me.
It was fantastic and I feel I really achieved a big step. I was very tired and glad to have a lift home. My chauffeur came in for a cup of tea and a quick chat. Very interesting because she is currently having a phased return to work after treatment. She is finding it quite tough and is shocked by how tired she is and she hasn't managed a full day yet and she's not been in class for more than two hours at a time. She is very concerned about September and being expected to hit the ground running. She had already decided to reduce her hours before her illness but even so she is very worried.
It really helped talking to her because I am just accepting that I too will find it too difficult to hit the ground running.
While saying goodbye to her the front door slammed on me - I was locked out! She wasn't able to help so I knocked on my neighbour's door and asked for help. This is a big achievement for me as I didn't hesitate to ask for help and I would've found that very difficult in the past. My neighbour is taller than both of us so she was able to help. Lucky the back door was open!
After all this excitement I drove to two schools briefly to gain information and picked up my son from school.

Today I had an appointment with Human Resource and my Head. I was allowed to invite a supporter so my sister was there too. The meeting took place in my house, in my sitting room. My dog just slept through it. The meeting lasted two hours as we discussed the plan for my return to work. I had prepared notes about all my proposals and what is important to me. I started off very talkative but did start to feel tired and gradually spoke less. I'm glad my sister was there as she had my best interests at heart and spoke eloquently on my behalf when necessary. The HR lady was a good source of knowledge and suggestions. I was pleased with the outcome of the meeting as there is a clear plan in place with scheduled reviews .
I am now tired.

Pain Management

Well...today I travelled to London and back on my own.
Firstly, I drove my son to school. Then I took the dog for a walk around the block which was about 15 minutes - must get my self something to measure distance or is time more helpful? Hmm.. I'll have to decide.
Then I walked to the station and travelled on the train, and then walked from the station to the hospital. The Pain Management course/group was as helpful and useful as ever. I really need to try and understand how the nervous system works so I can explain it to someone else - that's my test that I have understood something - if I can explain it then I must understand it.
I'm now very tired so I'll finish this post tomorrow...

Here I am!

I didn't realise I hadn't written anything since Thursday! I was working on some of the pages on Friday so that's an achievement. I also had a long conversation with HR which was very reassuring. She knew the laws and procedures involved and assured me that her role is neutral and advisory. I shall wait and see.
I've done quite a few machine wash loads and it's all dry and put away. I've been soaking up the wonderful vitamin D and of course watching the tennis at Wimbledon. Glued to the set! And there's cricket to watch next week as the Ashes starts.
I took the dog out for a walk by myself, we didn't go too far as I had to wait until the weather had cooled down and therefore it was getting late.
Today I drove to see my Mum & Dad. It's about a 20 minute drive. My son came with me so that I wasn't driving alone, plus he wanted to visit them too. On our way home we did a bit of shopping. It was probably a bit too much altogether and I had awful pain for a while. I found that doing my mindful stretching exercises worked to distract me from the pain and also I felt better afterwards. Note to self: even if you don't feel like it - gentle, mindful stretching exercise helps.
I read a few more chapters of my women's springboard book but it wasn't really going in - I need to concentrate on it and do the activities. I think the sun and the work situation were distracting me.
The weekend away with my sister is all booked so that's something to look forward to.
I have a busy week ahead but I'll write about it as it happens. I also have a list of things to do, phone calls to make, places to go. This will be a test of how much I've really recovered and how much I can achieve. And what the effects will be.
I carried a cup in each hand for a few seconds. I sorted out our home insurance and got us a much cheaper deal with a well known company. I've vacuumed a couple of times.
I'm having dizzy spells (pre-syncope) again. I think about the fairground roads I used to have a go on years ago; the spinning ones like the Waltzer car. Hold on tight, we're going for a ride!
I must remember to write every day although it has to fit into my back to work plan so that might have to be reviewed. I'll work out what is feasible...
I'm quite pleased with my new pages and I've given lots of information about CRPS to a friend who thinks her mum might be suffering with it in her feet. She's seen so many specialists and is getting very frustrated; sound familiar? She is negative about taking any medication but so was I two and a half years ago - things change, life changes...

Today Another Beginning

Today I need to start to get used to the idea that I have new symptoms that are part of my CRPS and therefore I have to learn to live with them. Apparently not all CRPS spreads and certainly doesn't affect internal organs. This piece of research is interesting ( difficult for me to read due to all the scientific language but I think I get the gist.) It has 200 references so I'm guessing it's fairly reasonable to read it with some credence. The title is:-
Systemic Complications in Complex Regional Pain Syndrome

I am persevering setting up my new life routine. I have to make new plans for a new future. I have a bit of time to set routines before I have to return to my full time job.

Today I ironed 5 shirts, put the washing on the line, vacuumed, did 25 minutes mindful stretching exercises, 2x5minutes mindful breathing, walked for 20 minutes round the block with my husband and dog. Not bad...

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!

A better day

I ironed 5 shirts today! I love my steam generator iron - bit expensive but sooo worth it! I sat in the sun for a couple of hours, topping up on vitamin D, and of course resting which is what the doctor ordered! I've looked through the draft yearbook and am now really missing all the children. It is looking fantastic, so many photos, so many memories, how lovely for them. We didn't have that sort of thing in my day! Although they are also having a Prom, certainly didn't happen when I was at school (in the good old days!!)
I talked to my Head on the phone for half an hour, another achievement with CRPS! I'm trying very hard to be non judgemental about my situation at the moment - I will get back to work soon enough. I have an appointment next week with Occupational Health so let's see what they say.
I feel much better today than I did yesterday so that's an achievement with CRPS all by itself!!

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!