Getting a bit tired

I went to the hospital today,; I had to get up early and was absolutely packed like sardines on the Central Line, to get there for 9am. I spoke to a very nice research student who is doing a Phd on the effect of alternative therapy for chronic pain sufferers. I'm glad to be part of research if it will help other people in the future. The Dr was also very nice but her assessment hurt. In her opinion, acupuncture might be too painful for me, at least at the moment, so she has referred me to a specialist who might be able to offer alternative or complementary help. I then travelled back to work, the Central Line was still very busy even though it was lunch time.
After school I held the School Football Team trials; I have reached the conclusion that whatever I do with regard the School Football Team, someone is always upset. So I just need to grit my teeth and do what I think is right knowing that someone will be upset. Most of the boys went home happy enough and I have 2 school Football Teams that are actually both quite skilful.
Life is very busy at the moment...

hmm... telling...

So I went back to school on the 3rd September and haven't blogged since the 5th - very telling of how busy I've been. And I haven't got time to blog now because I have Maths books to mark. So achievements - yes many - time to record them - 0.
Not sure what I can do about this except put some time aside at the weekend. Family life is also very busy so really not sure that's the answer. Just goes to show how hard it is to be managing a condition and working full time with a family also...

Back to School

I went back to school yesterday and was in class all day - I am very pleased with myself - it is a huge achievement. I really enjoyed it and I have a lovely class of children - 10 boys and 10 girls - so not a whole class under normal circumstances but they are my class at the moment. New children are joining all the time, I had two new additions to my class yesterday - 1 boy and 1 girl.

Many people came to find me to see how I was getting on and if I was coping. The majority of people are so kind and thoughtful. I thought I was going to find it more difficult especially given the bad news about my Dad on Tuesday. He wants us all to be positive and to carry on as he is doing himself so bravely. I was at the hospital with him so I volunteered to 'phone everyone to let them know the news. That was how I spent Tuesday evening.

I have a couple of hours at home today to recuperate from yesterday and my class are in the trusted hands of our regular supply teacher who is wonderful. She met them yesterday so they will be fine and I've left some lovely work for them to do. I think I would rather bank her time as I don't think I need it as much now as I will later on when I've been teaching a few weeks and parents' evening is looming. Hopefully my Head will agree.

Blood test first thing this morning - my husband and I both had to go - a nice little trip out together. We arrived at the hospital at 7.30am and there were already 68 people queuing before us. We were seen at 8.45am so not too bad. Hubby seems to be getting better every day and he is driving now as well so he can occupy himself better.

My youngest son went back to school today looking very smart as usual on his first day. He'll moan when he sees he has an appointment with the careers officer on his half day next week. All sons at home at the moment so it's all a bit busy here at home - nice though.

I have to make some 'phone calls now for my Dad and for my Access to Work. Oh and I've been ironing and dog walking and driving and washing and... must be careful not to overdo it.

A whole week!

So much for my resolution writing more often, I've left it a whole week this time. Where to start? On Saturday I had to travel to London for one of my pain management group sessions. As always it was very useful. But is a long day and the journey is tiring. On Wednesday, Thursday and Friday I went into school for a couple of hours each day to familiarise myself with school, my classroom, the people, and the journey there. On Wednesday my son rearranged the room for me and finished off any lifting or carrying so that on Thursday and Friday I was able to go into school on my own and get my brain back into school.
We've been food shopping again, very slow. I have visited my sister and my mum and dad stop I think I find five shirts and I have done loads of washing. Hubby and I have walked the dog very slowly a few times. Today we had to queue for the uniform shop as my son needed a new blazer. I picked my other son up from the station with his stuff and then took my other son to have his hair cut and buy new shoes for school.
I can't remember what else I've done and now I'm feeling tired – it's my first day at school tomorrow.

Thursday - Monday

Oops I've left it too long again and now I'm going to have to really think about what I've done. I've finished the Maths paper and emailed it off so I'm really pleased about that. I read it again this morning and found a couple of things I would add or change but it's one of those things that I could keep adding to and changing so I have to let it go. I'm free now to think about school work for this week. It's Bank Holiday Monday today; I've hung some washing out and collected the pears that have fallen from the tree - that takes so long and so much effort. I'm just about to iron some shirts - I wonder how many I'll manage. Hubby wants me to take him to drop something off and do a little bit of food shopping - it's strange that he can't drive at the moment - I wonder how long it will be? He is so much better already but he's still bruised and a bit swollen so he's being sensible and taking things slowly.

I had to take my lovely car to the dealer on Friday; it was recalled because some have been found to have a loose steering wheel bolt. That was a lot of effort as I had to walk into town, did a bit of clothes shopping and get the bus home. As soon as I'd reached home the dealer rang to say my car was ready to pick up - typical. I got 2 buses back so that I didn't have to walk far and they'd cleaned my car inside and out too - lovely.

I took hubby food shopping on Saturday and we bought quite a lot - he was even slower than me walking round and I had to pack the shopping into bags - it all took ages but we did it. We asked my son to get the bags from the boot of the car; that was a bridge too far. The cricket has been on TV so we've watched that which takes up all day. It rained all day on Saturday, ad I mean rained - it didn't stop. Some towns nearby were flooded for the first time in years it was that bad.

I helped my son clean out next door's guinea pigs while they're away. They are sweet, but bigger than I thought they'd be. They squeak a lot and love their food. I've done my mindful stretching exercises every day in the morning, they really do help to get me going. The pain has been bad but I've been trying the mindful exercises so that I'm trying to just acknowledge the pain and not get annoyed, sad, upset by it. It still hurts as much but I feel more in control I suppose. It's difficult to unpick all the feelings.

Right, I really must try not to leave it so long to write although the days fly past and I don't realise it's been so many days. In a way perhaps that's a good sign that I'm not constantly consciously thinking about my pain and I do forget to write. Right, where's that iron?

Saturday - Tuesday

Well first, a big achievement is that I haven't opened my laptop - no checking emails, work -nothing. That's partly because hubby had a hernia operation on Saturday, very time consuming. He's doing well and can now make himself breakfast and a cuppa. I had my hair cut and finished on Monday; always tiring. I did a little bit of shopping for clothes while I was In town. I took the dog to have his nails clipped yesterday with the help of my son. I've been to the doctors and chemist a couple of times - poor hubby. I've done a few loads of washing and made several phone calls. I bought a new telephone yesterday and am busy setting that up. I missed my mindful stretches twice which felt really strange - I need to make them a priority; did them this morning.

I had to drive there and back to the hospital twice on Saturday so that was a lot of driving. My son put some petrol in my car for me. I've been food shopping a few times. I've ironed a couple of shirts and vacuumed once. I picked blackberries in our garden and made a tart which we ate with custard - much tastier that I thought it would be. Today I need to try to finish the maths or at least nearly - it's beginning to bug me now and I want to send it off.

Wednesday to Friday

Had a cuppa & a chat with The In-Laws - very pleasant 2 hours. Ironed 5 shirts. Walked dog once for 20 minutes. Visited Dad & sister for a total of 5 hours. Did food shopping, that was tiring and I had to stop once and hold on and breathe. Stretching exercises every day. Hung washing out a couple of times. Made a few phone calls which I find tiring. Paid deposit on new bathroom. Bit more shopping. Bit more Maths work.

Gosh doesn't sound much when I write it down but it's all pretty tiring.

I've excelled myself today. I had tea & biscuits this morning for 2 hours and we chatted the whole time - very pleasant sitting on the decking in the sunshine. Then afternoon tea & cake meeting an adorable puppy who is already being very well trained - delightful. Ironed 4 shirts and was up, dressed and exercised by 9am - getting there.

Thinking about joining a gym as I feel I need to do more exercise although not sure if the cost would be worth it. I might wait until I'm back at work and see how I feel. Unless the gym can offer me a free trial - think I'll ask.

Tired now...

A few more days

I feel a lot better than I did on 8th August. Who am I to question pain, life, Earth, The Universe? It really isn't helpful to let negative thoughts in - if thoughts are like buses then I need to choose the ones I engage with and let the others pass by. It's hard to do this and it needs effort, which when you're suffering in pain is hard. I need to know what I need to do when I realise the blanket of negative buses is descending.
So, I've ironed 5 shirts, taken the dog for 2x 20 minute walks, attended a hospital appointment, visited Mum & Dad, made 2 dates for tea & chat, completed more Maths work, had a new boiler fitted, applied for a loan, considered my Sky package, cleaned a window, filed my course notes, read a whole book 400 pages, made a timetable of red, amber and green activities for September, checked emails every day, and mindful stretching exercises every day.

I need to record achievements more frequently otherwise it's too much effort to try to remember what I've done.

5 Days

I have realised I haven't written for 5 days...that's a long time. Have I really had no achievements in those days? Let me try to remember:-
I ironed some shirts, maybe 3, can't remember what day.
British Gas visited and quoted for a new boiler, he was here for ages but we got the quote in the end and it was pretty much what we had guessed. Their finance package is good so we paid a deposit and booked an appointment, really soon too.
We could then confirm with the bathroom shop that we accepted their quote for a lovely new bathroom with a power shower - just what I need. I could've done with a power shower this morning. So that appointment is also now booked. We've got to pay the deposit for that this week.
Took the dog out for a 20 minute walk once.
Did a bit of research for my maths task.
Read 100 pages of a book my son recommended to me.
Hung out a few loads of washing, can't remember how many exactly.
Washed my hair today - always a tiring task.
Had my annual contact lens check and two yearly eye check, that is sooo tiring... I must have had every test imaginable and the end result was that everything is ok and no change.
Oh yes, and I've done 25 minutes mindful stretching exercises every morning. It's kind of good that I'm forgetting that I do these as it means it's becoming part of my routine without having to think about it. I've read that getting into routines helps free up brain space because you don't have to think about it. I need all the brain space I can get.
Erm...that's 5 days worth of achievements, I suppose there are some good achievements with CRPS in there. I'm feeling depressed and guilty that I feel depressed because I've got no reason to feel depressed which is making it worse. I keep telling myself to think positively and embrace each moment but it's not that simple. I have a huge, thick, dark blanket over me and I can't just shrug it off. It's not rational, or reasonable - it's suffocating.
I'm trying really hard to appear normal, whatever that is, but I know I've snapped and grumped. I want to do something but I don't know what I want to do so I can't do it.
That's why I'm going to see my sister today, I'm hoping that will help me shift the blanket. The weather is sunny so that helps me a bit. I'll pop into see my Dad, that should help too.
I'm thinking I might need to ask for more medication because my arm and chest are painful more and more and I know I don't have to put up with it but I'm frightened to increase medication as it seems I never decrease it. I could try taking extra paracetamol first, I could take an occasional co-codamol, that shouldn't affect me too badly.

Decision

I have decided that I can't write my blog every day and I shouldn't feel bad if I don't. After all, it's all about achievements, it's supposed to be a positive exercise. The thing is, I'm having real difficulty being non judgemental. I can see all the good reasons why being non judgemental is helpful and that I need to strive for it every day. I need to make a conscious effort all the time to avoid making judgments and also to see the difference between a fact and a judgment. I remember a few years ago now, a university lecture all about what goes without saying. So true. There are so many things that I take for granted and accept without even thinking about them because that's how it is, that's how it's always been, that's the only way it can be... So not true - so needs to be challenged.

So this is me, making a conscious effort to challenge all those things that go without saying and making constant judgements. If I can stop making judgments all the time then perhaps I can enjoy each moment for its simplicity. I'm here, sometimes I wonder why I'm here, I often wonder why I've got CRPS and at the moment this electricity shooting up and down my left arm and chest, but I am here and most of the time it's good and pleasant and I should enjoy every moment of it.

Aagh

My arm is still hurting and is getting worse. It feels like an electric shock starting in my fingers and then travelling up my arm and across my chest. It really stops me in my tracks and takes a while to ease enough to be able to continue what I'm doing. It feels like if I touch someone they will surely be able to feel the electricity but my hubby and son say they can't feel it. I take painkillers and focus on my breathing.

It has stopped me a bit but I'm determined it won't stop me too much. I vacuumed all downstairs today. My son moved the furniture and also helped. I did 25 minutes mindful stretching exercises including the ones on my front. I went to Tesco with hubby and did the weekly shopping - I only had to sit down once. I hung the washing on the line when the thunderstorms had gone.
I feel so much better every day - the rest is definitely working.

Later, though, I didn't feel too good at all - I'd used up all my spoons and borrowed some from tomorrow - I must remember about pacing, it is important and I keep forgetting that this is my life now. When I feel well I forget that I've got CRPS and that means I'm not able to do all the things at once anymore. I can still do all the things I want to do but I need to spread them evenly taking care of my daily allowance of spoons and being mindful.

This post really shows how up and down Rollercoaster CRPS is and therefore how mindful of pacing I need to be...

Spoon theory = http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Sizzling

It was extremely hot weather today. I did my 25 minutes mindful stretching exercises, 2 loads of washing on and off the line, drove to the doctor's and back. I cut some of the rhododendron. That was plenty for today -needed a rest.

Resting

I've ironed 4 shirts and hung out 2 loads of washing. I've done 25 minutes mindful stretching exercises. We went to the hospital for hubby's pre assessment. It was all fine and we were there and back in an hour or so. I then drove to the supermarket so that my son could buy bits for his next cooking experiment.

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.

Maths

Today I travelled on the tube to the Institute of Education. I was sitting down all the way there and it's not far to walk from the station. I remembered to catch a bus to the station which meant I wasn't tired by the time I got there.
There were more people there than I thought there would be, they came from all over the country. The people I spoke to were all interesting and there was a lovely lunch and an interesting task.
I travelled home on the tube. It was quite a tiring day because there were lots of new people and I had to concentrate on the discussion and demonstration as well as talking to people.

Not yet though

Writing this at 7:45pm so I haven't started writing my blog after my mindful stretching exercises yet. I was in a bit of a rush this morning - I still did one load of washing and hung it out. And I still did my mindful stretching exercises for 25 minutes. I really have trouble getting going without them, they help so much. I drove to work and worked all day sorting through papers and things, finding a new home for everything. When I left my classroom all the surfaces were absolutely clear so that the cleaners can have a good old clean. It was a good feeling as I closed the door knowing how tidy it is. That's a big achievement. My son was a super star - he lifted , moved, shredded, binned... all to my command. He also helped other teachers with their boxes and furniture. We threw out 6 black bags full and a collection of boxes. I bought him a takeaway and said thank you a million times.
We're both tired now..
But I did quite a long day and worked quite hard and I feel so much better now. I need to write my flare-up plan.
Oh yes... I also opened the cards and gifts the children left for me. I'm always overwhelmed by the generosity of the gifts and the beautiful words written in the cards. I'll set a time to write each single one of them a Thank You note and deliver them by hand. No flowers or wine which is perfect for me and a little bit of chocolate which is also perfect.
Oh yes...and we celebrated my son's 21st birthday yesterday. Perfect.
Did I mention we celebrated my sister's 50th birthday too? It's her birthday today and she is in The Grand in Brighton with a sea view and afternoon tea. Lovely. She loves the Spoon theory and has shared it with others.
Just phoned my Dad, he seems in better spirits today partly because he's finished the antibiotics and can drink Guinness again.

Work

On Monday I had to go to my GP to get permission to be on school premises while I'm signed off on long term sick leave. I need to find all my stuff that classroom assistants helpfully packed into boxes for me. I'm gradually finding my stuff. I had to rummage for my books but we found a lot of them. My son is helping me - he follows all my instructions while I'm sitting and resting. Last day tomorrow and then school is shut until the end of the holiday. I have 4 boxes to be unpacked and we've already unpacked 4. We've found new homes for the stuff so far.
I ironed 4 shirts. I've done a few loads of washing and hung it out. I've driven to school & back a few times. I've done a couple of trips to the shops and the bank - it's my son's 21st birthday and my sister's 50th birthday.
I'm too tired to remember - I'm going to start to write my blog in  the morning after I've done my mindful stretching exercises as I'm too tired in the afternoon

The Weekend

Yesterday I:-
Did 25 minutes mindful stretches with DVD
Walked dog as fast as we could walk 20 minutes
Drove to see my Dad. My Mum is going away for 5 days so I'll need to stay in touch with Dad to make sure he's ok while she's away. He says he likes being on his own sometimes. I can understand that - not having to justify or chat...
Drove home
My new gerbils arrived in a fantastic snazzy cage with loads of toys and gadgets. They are Milly and Molly. We need to handle them lots so that they are ready for the school children. I think they are about 4 months old; an ex work colleague didn't want them any more so I've adopted them. My previous gerbils, Salt and Pepper have been adopted by a work colleague because she got attached to them while she was looking after them because I was absent from work due to long term sick leave.
Drove to restaurant with hubby and drove home

It was lovely to go out to dinner with my hubby. We had a lovely chat and saw a couple of people we know. He wanted a little walk after dinner, I was tired but I didn't say anything and actually it was alright. I'm glad we did - I don't want to be forever saying I can't do things.

Today, I struggled out of bed. I had a warm bath and did 25 minutes mindful stretching exercises with the DVD; they really do help - I feel like I can move afterwards. I've pretty much sat today, on the internet reading; "The Royal College of Physicians' Guidelines for CRPS (2012)" which was interesting reading although I didn't learn anything new. I'm trying to find where it said that CRPS spreads after 2 years, I'm sure I read it and didn't imagine it. I think it's important to me to know that my CRPS might have spread anyway either with or without hard work and stress. I suppose I want to know I can work hard and have a bit of stress without risking my health. I think I will be more able to deal with the stress now because I have spent a lot of time learning relaxation techniques and realistic expectations and trying not to judge. I need to try hard not to judge because I find it difficult and also I need to try to acknowledge thoughts without necessarily engaging with them.
I also ironed 5 shirts today. I've been watching the cricket; the Ashes. I hung the washing on the line.

Borrowed Spoons

Yesterday I got up at 6.30am.
I got washed and dressed.
I did 25 minutes mindful stretching exercises with the DVD ( my theories on mirror therapy - Wednesday 17 July 2013)
I drove my son to his work experience placement and then drove myself to work by 8.45am.
I watched the last whole school assembly of the academic year.
I had photos taken with my football team and with my class.
I said goodbye to my class and wished them good luck etc. for their new schools in September.
They gave me a group hug but I had to squeal, " one at a time!!"
I talked to a few people and drove home.
In the evening, I got a lift to a restaurant where I had dinner with about 20 work colleagues.
I had to wait 2 hours for dinner, by which time I was ready to come home! I think because we were a large group and quite a few were drinking expensive cocktails, they delayed our dinner for as long as they thought they could get away with. Also, most of our group had a starter, I so wished I had!
I chatted to most people; one lovely conversation somehow turned into a very long debate about food, why do people always want to talk about food to vegetarians? It made me feel quite sick, bit fortunately I was able to turn my head and talk to different people about the prospects for a bride in an orthodox Jewish wedding. I got a lift home.

Today, I dragged myself out of bed.
I did 25 minutes mindful stretches with the DVD and also 15 minutes body scan. I had to stop the body scan as I began to feel unwell.
I took the dog for a walk before it got too hot, 20 minutes.
I've now spent quite a long time searching the web about a new treatment that has been mentioned to me: NAET. The thing is people quite often want to feel helpful so they suggest all kinds of treatments and theories etc. I know they are trying to be helpful but I find it hard to stay positive and accept my condition when so many people seem to know the cure. It makes me feel again that there's nothing wrong with me and it's all in my head and any one of these suggestions will cure me.

I also found the spoon theory that I like http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
and this
http://www.butyoudontlooksick.com/wpress/articles/sick-humor/sick-humor-the-top-ten-worst-suggestions-commonly-given-to-someone-with-a-chronic-illness/
Haha I need to laugh!!!
The internet might be a minefield but it is also a saviour.

Drove to work and back today.
Washed the car - well it looks a bit cleaner.
Ironed 2 shirts.
Spoke to lots of people at work.
Walked the dog before it got too hot. 20 minutes
Hung the washing out.
Did my mindful exercises and I 've just realised that doing them with the DVD serves another purpose - I'm watching the lady demonstrate the stretches as if I'm looking in a mirror and it's working a bit like mirror therapy (graded motor imagery). I can definitely feel something happening while I'm mirroring the lady.

PS Don't mention risk assessments to me...

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...

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....!

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...

More Positive

Ok. There's stuff going on with my employer and it has been upsetting me. I have sent an email outlining my concerns and I immediately felt a bit better. I have avoided checking my emails because that's what set me off again this morning. I sent a short email yesterday putting forward my suggestion and when there was no response when I checked this morning I got upset. So I'm not going to check my emails until tomorrow morning. Honestly if I received the email I sent (which was quite long and emotional) I would have to make some reply immediately even if it was just an acknowledgement.

Anyway, achievements for today: I took our dog for a 20 minute walk, on my own and as fast as I could walk. I knew my son would be home soon so if I got stuck I would be able to call him to help me, but I didn't need to. Also, I did my 25 minutes mindful stretching exercises and 25 minutes mindful body scan. That made me feel much better this morning.

I've decided that I need to be more determined. I would say I've always been a very determined person and do what I want as long as it's not hurting anyone. Somewhere, at some time, I've lost my determination and focus. I've become an ill person who listens to what everyone says, gets confused and then follows someone's advice. I end up doing things and wondering how on earth I got there. I've stopped doing things because other people have told me to. So, I've made a conscious decision to get it back. I refuse to be defined by CRPS. I need to be me who just happens to have CRPS. I really am learning to be me with special effects.

Still not positive

I did manage to iron 5 shirts, pick up my prescription and pay a bill at the bank though.

Not feeling positive

I haven't written for a couple of days because I haven't felt positive and that's not an achievement. I hope to be able to write soon.

A Sunny Day!

Ok.. Woke up this morning aching all over and groggy. Shut my eyes again for half an hour then had a warm, bubbly bath followed by 25 minutes mindful stretching. I did all the stretches and just did some of them for less than 15 seconds. Feel better. Hung the washing on the line and ironed 8, yes 8, shirts! Woohoo!

Sat in the lovely sunny garden, did a full body scan just using my own focus...pleased with that as it may not always be convenient to have the downloaded file next to me when I need to do a bit more than mindful breathing. I think the file is too big for my phone so it's on my laptop. I also did mindful breathing. Hubby made me lunch, yummy!

I then started my Springboard book that my sister bought me for my birthday recently. She is part of a Springboard personal Development Course for Women. It is really helping her so she bought me the book so I could have a go at doing it myself. I haven't got the support of a group but I do have the support of my sister so I am feeling confident with it. I read chapter 1 and started chapter 2. It has really got me thinking about how I have approached work and education all these years. I have taken it all so personally instead of thinking of separate roles I need to play. Each role has its own power and responsibilities.
to be continued...brain fog alert!

Measures

I did 25 minutes mindful stretching exercises. I hung washing on the line, 2 lots today! It's sunny weather - lovely. Might top up my vitamin D!
I sat down and stood up as many times as I could in a minute. Today I did 15. Last time I did this was exactly a month ago and I did 7 before I collapsed! That's double...that's good. I think I'll use this as a measure for how I'm doing.
I also measured my wrists:- left 16cm, right 17cm. That doesn't seem too much difference.

Spent a lovely teatime with all my family (there are lots of them!). Really pleased - I had a chat with everyone and lasted two and a half hours before I had to come home. good job!

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.

Reports done!!

I've had a busy day. Did 25 minutes mindful exercises, a few breathing sessions, paid a bill at the bank, walked the dog, with hubby, round the block - the uphill bit still gets me. And.....
I've finished my reports and emailed them! That's it -I'm not looking at them again! It makes you cross eyed in the end! Now I really must concentrate on getting better and making a new routine. Also need to set new targets.

I did 25 minutes mindful stretches to get myself going this morning. Also 2 lots of mindful breathing. I've watched Wimbledon - it started today. So close to finishing my reports, determined to finish them tomorrow. Walked round the block, had to stop once but made it back home. Had to take a few more Paracetamols today. Once I finish my reports I can really concentrate on making my new routine a real habit so that I don't have to think about it and it goes without saying. That's my target at the moment.

Not such a good Day

I think I overdone it yesterday - I woke up feeling awful. I did my mindful exercises and that helped. I've also done lots of mindful breathing today. I've nearly finished my reports. And the cricket is a bit of a washout!
Back tomorrow bright and cheery...

Achieved a lot today!
Drove a mile, parked the car, walked to the chemist, walked to the library and then back to the car. While walking I was overtaken by a very elderly man with a walking stick! but hey!
Hung the washing out, visited Mum and Dad, talked for an hour, saw my sister, talked some more! discovered that it hurts when I laugh!! Oh well, that's not going to stop me!
I also managed to backup my exercises so that will stop me worrying about losing them. They are priceless to me.. That's what gets me up and moving in the morning.
Well it felt like a very busy day, I feel like I haven't stopped. Hopefully should sleep well...

Getting the Hang of Blogging

Aha! I'm getting the hang of this blogging thing a bit. I've been looking at other blogs, trying to pick up hints and stuff. So my first achievement today is creating tabs. I want my blog to look interesting. So I'm going to put pictures on and jazz it up a bit.

I really need to finish those reports first so I can concentrate some time to my blog. I'm going to set myself a deadline of tomorrow evening to get them done. I'm visiting my Dad today but I still think it's a manageable deadline - I'm pretty close.

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!!

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!