Situation resolved

So with the help of my lovely physio I am now back on tramadol, with enough to tide me over till my Saturday appointment with the pain specialist.
As soon as she saw me this afternoon she knew all was not right and was on the phone to organise an interim supply.

Apparently part of my symptoms, the not being able to keep still were withdrawal symptoms-whoops on my part. Apparently I am on enough that its not a good idea to go cold turkey.

One thing it did prove though was I do need the meds, so it wasn't all for nothing-and I dont want to do that to myself again!

Todays physio session was focusing on pain relieving strategies so that was also helpful. We worked out the best things for me to do in the water to relieve pain when I am in a flare. All I can say is thank goodness for people who are there to help.

A+ for dumb idea

Hello! My name is stupid…

Ok so I may not be the brightest cookie…

Running out of meds was NOT my brightest idea…

Gee I guess if I was wondering whether the tramadol was helping or not I have got my answer, I want some now, I cant sit still due to the horrid crawly, intense ‘I cant sit still’ sensation of nerve pain.

I tried my TENS, mirroring, trying to sleep was a nightmare, I couldn’t even lay still but eventually I cried myself to sleep. Yes, I am ashamed to say I cried a lot of tears…mostly of frustration and telling myself off for getting into this position, but also in pain. This is where having a room of your own is most important, you can cry as much as you want and everyone thinks you have just gone to bed!

I have a 40 min drive ahead of me to get to physio and right now I am wondering how I am going to sit still for the drive, I sure wont be doing this to myself again in a hurry-guess I have learnt my lesson good!

Just to explain a bit, I only got given a 2 month rx for tramadol as it was a newly introduced med, then we made a follow up appointment-just didn’t realise it was 2 months 3 DAYS after the last one…so thus I ran out 3 days before my appointment. I did work this out last week but silly me thought that I would be able to handle 3 days without and didn’t want to bother the dr beforehand…I’m thinking I didn’t put much thought into that lol.

Oh well, you live and learn-sometimes more painfully lol!

Two schools of thought...

I have always wanted to do ballet but we never had the money when I was growing up so it never happened. I was talking to a friend the other day and she said I should find out about adult beginner classes and just see if it might be possible so I did as she suggested.

I got some information back and it may be affordable, just need to do some working out.

But here is the crunch…I told my Mum.

Her first thought was “what makes you think you will be able to do ballet?”

…my reply “what makes you think I can’t?” (I didn’t actually say this out loud, instead I defended myself by saying all the things I still do, so why cant I just give ballet a go?...)

Ok so I may get there and it may be too much but how do I know if I don’t try? I’m not about to give up a childhood dream just because ‘I may not be able to do it’…when did I turn into that person? I don’t expect to be doing point or making it my career, I don’t even know if I will ever look graceful I just want to give it a go and have some fun in the process…

I just find it interesting that’s all, how different people think along different paths, it never occurred to me to think that maybe I wouldn’t be able to, I wanted to challenge myself and see if I could.

Tips for a better life...

I don't normally do the whole pass it on thing but these really stuck a chord for me and I thought I would share them with you my lovely readers if you feel like reading them, some of them are pretty important things to remember I have a feeling...

By Nithya Shanti
Tips for Better Life

1. Take a 10-30 minutes walk every day. And while you walk, smile.
2. Sit in silence for at least 10 minutes each day.
3. Sleep for 7 hours.
4. Live with the 3 E's -- Energy, Enthusiasm, and Empathy.
5. Play more games.
6. Read more books than you did the previous year.
7. Make time to practice meditation, yoga, and prayer. They provide us with daily fuel for our busy lives.
8. Spend time with people over the age of 70 & under the age of 6.
9. Dream more while you are awake.
10. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
11. Drink plenty of water.
12. Try to make at least three people smile each day.
13. Don't waste your precious energy on gossip.
14. Forget issues of the past. Don't remind your partner with his/her mistakes of the past. That will ruin your present happiness.
15. Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
16. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class but the lessons you learn will last a lifetime.
17. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
18. Smile and laugh more.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Don't take yourself so seriously. No one else does.
21. You don't have to win every argument. Agree to disagree.
22. Make peace with your past so it won't spoil the present.
23. Don't compare your life to others'. You have no idea what their journey is all about. Don't compare your partner with others.
24. No one is in charge of your happiness except you.
25. Forgive everyone for everything.
26. What other people think of you is none of your business.
27. However good or bad a situation is, it will change.
28. Your job won't take care of you when you are sick. Your friends will. Stay in touch.
29. Get rid of anything that isn't useful, beautiful or joyful.
30. Envy is a waste of time. You already have all you need.
31. The best is yet to come.
32. No matter how you feel, get up, dress up and show up.
33. Do the right thing!
34. Call your family often.
35. Your inner most is always happy. So be happy.
36. Each day give something good to others.
37. Don't over do. Keep your limits.
38. Share this with someone you care about

I've been tagged...

So I’ve been tagged, huh-sorry was I playing tag? You know I cant run, how is this fair? you didn’t give me long enough to get away…lol.

Rules: Once you’ve been tagged, you are supposed to write a note with 25 random things, facts, habits, or goals about you. At the end, choose 25 people to be tagged.

I am the kind of person who usually cant be bothered with this type of thing. I don’t go much for those forward emails and such although some I do actually forward to select people myself (if they really do engage me).
But I found this interesting, I was curious as to what I would actually put as my 25 things and whether it would be hard to do so I gave it a go.

I’m not going to “tag” others though…if anyone wants to have a go feel free and join in the fun but I’m not about to force people or make them feel obliged.

*I’m not sure I even know 25 people to tag anyway lol!


Ok so 25 random strange things you may or may not want to know about me (in no particular order)…

1- My Dad thought I was a boy when I was born…the midwife knew otherwise and shoved my baby parts in my Mothers face to double check (although I’m sure she wished I was a boy over the years, all the trouble I have caused).

2- I was awarded “Most improved player of the season” at our Tennis club when I was 10, the second person to get this Memorial cup

3-I sort of saved my whole family and our house to some degree the morning of Christmas Eve 2001, when we had a house fire and I was the first to wake up (remember to put shoes on if nothing else if you are ever in this situation).

3-I was home schooled since I was 12, I don’t have any high school qualifications but I am a bright cookie (getting into physio school proved that)

4-I have 5 brothers, 2 older and 3 younger…one (older) who has special needs, both physically and mentally

5-I love to wear dresses and skirts and look pretty but when I was growing up I was more of a tomboy

6-I do things to please others, though I am learning that I actually come first…

7-I’m almost 24 and I have never been kissed by a boy (how sad is that!)

8-I am a cry baby, very emotional…I remember crying when I first watched the ugly duckling at age 4

9- I feel other people’s emotions very keenly, so much so that they can make me feel very sick and I wonder how other people don’t seem to notice anything

10- I have never dyed my hair (my cousin put in highlights once but I don’t think that counts)

11- I have had self esteem issues ever since my first day at primary school when I was bullied

12- I’ve had hip preservation surgery that basically enabled me to walk again (and gave me a cool scar and some screws)

13- I sung solo in a primary school production (was one of the lead parts too) but I have lost my ability to sing now, due to meds I think

14- I am still quite proud of my boss’s speech at my leaving presentation (my first ever job, worked in a law office for almost 2 years). He had pulled out my CV covering letter and read out how I had described myself when I had applied for the job and said that it was all true and more. I felt so appreciated in that moment.

15- I am Catholic and probably rather traditional at that, but it’s my religion and I don’t force my beliefs on anyone else so I’d like people to respect mine

16- I am a bit of a Winnie the Pooh fan…duvet, calendars, soft toys, stickers, stationery, clothing, jewellery…you get the picture lol

17- I still have a balloon I was given the day before my 5th birthday (its one of those fancy foil ones but still, that’s almost 19 years ago)

18- I was the first (after my Mum and Dad) to hold my 2 month prem baby brother, he was so little and connected to lots of machines that it was rather scary!

19- I have never been drunk, ever (I hate vodka, wine, beer etc which doesn’t help but I love chocolate :)

20- I go crazy over post-it notes, I have all sorts of different ones for different purposes

21- I slept under the table at my best friend’s graduation dinner, the poor waiter got such a fright when he saw me (so I got told)

22- I still only have my learner’s car licence (you can get this when you are 15) and I don’t drive-though I’m supposed to be starting to practice again sometime soon

23- I could never get my single leg spins on the ice quite right, used to have perpetual bruises on my knees because of it.

24- I am a perfectionist, this is a not so helpful trait

25-and last but not least-I have an inner strength building condition called CRPS, it turns your world upside down and sets a life long challenge, making the levels harder at will. I like to believe that I can win it over and get to the finish but know I need my friends to help me get there

Its just too hot

We are having a proper summer just now with temps up in the 30s Celsius. I am the first to say I don't like the cold but my previous tolerance for the heat seems to have disappeared too.

My bedroom is upstairs, and faces a direction that means thus far I have failed to keep it cooler in any way, in fact it seems to be the hottest room in the house :(
Not very helpful when it comes to resting up or trying to sleep, even at night as it doesn't cool down much either.

It is just too hot for me, my foot feels like it is so swollen that my skin could explode (it doesn't look swollen though so that is ok) and doesn't help the burning pain. I'm cranky from pain and lack of sleep and just wish I could stop hurting for just a little bit, I'm tired of all this...I'm hoping that this weather doesn't last too much longer as a few cool days would be appreciated-not just by me but I think a few people!

Worth it...

Hair done up nicely
Healthy looking face (created by natural looking makeup to hide the deathly pale face and exhausted looking eyes)
Nice jewellery
Pretty cream dress with roses and sweet little top to go with it
A spray of scent (Crabtree and Evelyn-Freesia)
…black trainers, but as soon as we were in the Church, the trainers came off and white ankle socks were left on.

I went to the wedding and I’m glad I did.

For weeks I have been trying to dream up excuses as to why I wouldn’t go…I don’t have anyone to go with… I don’t drive so I cant get there…I don’t know if I will know anybody else there…then I thought hell, stop being pathetic and just go (in the end I actually got to go with my bestest friends mother so I wasn’t alone, nor did I have no transport or not know anybody else there but I had made up my mind before all that).

She was beautiful, her dress was a dream, she radiated with happiness. It was amazing but I felt like crying as it made me wonder if I would ever get my fairytale wedding-I pushed that thought out of my head, this was her day and I was truly happy for her, it wasn’t about me.

May the promise you made each other last forever and may you be blessed with a long loving life together, growing closer with each passing day.

Through the eyes of the year

As the end of this year comes to a close, its time to look back upon things and reflect. What have I learnt? What have I achieved? What am I going to strive for in the New Year? Have I shown myself worthy of all the good that is around me? And so it goes…

This year has been unique in many ways, eventful, challenging, trying, good mixed in with ‘bad’.
I started and completed my first proper year of physio school, I finally got my CRPS diagnosis (after struggling for over 2 years), found an informed pain specialist and great physio, I made some truly amazing friends, I proved dreams can come true…

I learnt so many things, things that have meaning, things that don’t come easily. To carry on when the going gets tough and to believe those good times do come, to be brave when facing the unknown and fight like a lion.
I learnt a lot about myself, to trust my judgement; to persevere in the face of others doubt and that I am worthy. I learnt to put myself first sometimes, to listen to my body and that it’s ok to have bad days. I discovered that its fine to ask for help and that it’s not showing failure or weakness.
I learnt the importance of having people to talk to, the necessity of sharing with others and being a sounding board in return. I found out I could actually be helpful even though there is ocean between and many miles of separation. I discovered the healing in a simple act such as a hug or a kiss, the unburdening and secure feeling that occurs without words between two people who totally understand each other. I learnt that there are medical people you can trust and that some really do understand what you are going through.
I have learnt a lot…

I still have a long way to go in accepting my life as it is, I still have many things to learn and many things to achieve before I can say that I have fulfilled my obligations in this life, but I feel I am on the right path. Do I stumble? Of course I do, but I have friends to take my hand and draw me back to the path and I have faith. Do I forget to count my blessings? For sure, but I have reminders that let me know how fortunate I am.
Yes I live in constant pain, yes I have continuous barriers to overcome, yes I pretend to most of the world that I am fine, yes I have times when I feel like I can take it no more BUT I am still alive, I have been blessed with life…I still wake up in the morning and see the sun come in the window. I still hear the birds chirping in the trees and I still have hope. For as long as I wake up each morning, I have a reason to live and because of that I have a reason to fill this life with good things and to help others fill their life with the same. I have been given a beautiful gift and it is an honour to be able to go out and share it with the world.

So 2009, I am ready and waiting with open arms:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr

CRPS

Say Hi to Mel!

I'd like to introduce you to Mel, I found her blog yesterday and its an interesting read for many of us. She is another fellow CRPS survivor who is spreading the word to all who will listen!

Letting out the Hurt

Often times I try to gloss over the hard parts of living with chronic pain, well what good does it do me dwelling on it anyway? Or what good does it do anybody else? But recently I found out that in order to start feeling good once again (really good), I actually needed to get right down to the bottom have my pity party and then arise a new, ready to begin again on the right level and remind myself that I actually do have good days when I can compare them to the not so good times.

Bad days are ok, as long as you have good days too, as long as they re-focus you, and you don’t get caught up in the rotten feeling too long and forget that there is a reason to be alive.
There are many feelings that come over a person who lives in pain day in day out…

Frustration-at what you can’t do, at how others treat you, at the cognitive issues, being at the mercy of drugs you would much rather not take, at the abilities you used to be able to do and now have so much trouble with

Anger-at the Dr’s for not being able to help more, at yourself (what did I do to deserve this), just because you have all these dark feelings, because you cant make yourself do something just because you want to

Helplessness-that you have no power over what is happening, that despite what you do it has a mind of its own

Hopelessness-that you have no future, that nothing will change for the better, that there is nothing to look forward to

Loss of self worth-that because of the changes you are now of no worth to anybody, no-one will love you

Fear-of the unknown, of tomorrow, of next week, of next year…of a new procedure, a new drug

These are all very real feelings and the list goes on, things I’m sure we all go through at some point or another.
I am not ashamed to say that I cry, sometimes more of the day than not…I need to do this but these days are few.

But just because we have these feelings doesn’t mean we are incapable of feeling happy, excited, fulfilled, or lose the ability to smile and laugh and have fun - it just means we are human and sometimes this is an important thing to step back and remind ourselves of…we are human first and it is natural to think and feel everything we do and is not a moment of weakness or something to be ashamed of but just another natural part of being alive and it shows that yes we are human!

CRPS

A Hug from Me to You...

Isn't he just so cute? This is my special package that arrived in the post on Saturday and he came from a very special person! Alison you brightened up my day so much and I just love him to bits. Thank you so much.

Christmas and tradition

In my family, Christmas is that time of year when my Mum works well into the next morning for weeks on end preparing gifts for all the people she likes to make things for. She makes Christmas puddings, Christmas cakes, Christmas fruit mince pies and all sorts. She goes shopping for presents for us all and makes lists of what she needs to do for the day itself, it is a huge extra workload.
But in among all this, she has not forgotten the meaning behind Christmas, it is not just a commercial holiday for the shops to benefit from, it is a special time of year to remember the wonder and meaning behind Christmas, a time to let your differences go and celebrate with family making time for everyone in a way that often gets lost throughout the rest of the year.
I felt frustrated and guilty many times in the preparation before Christmas this year. I did not help in the way I wanted to, the way I always used to. I wanted to help and make her load lighter but physically I was not capable and she often shooed me away off to bed or to rest because she knew and understood that my needs were greater than hers. This was the hardest Christmas for me yet, even harder than the year I had just had surgery and was on two crutches still. I don’t think it was because I didn’t make the effort, I just think I didn’t have it in me, things have got worse and I’m still drained from the year at uni.
I’m glad she understood though and even said I had done my fair share and it was time to get out of the kitchen so the boys would go in and help. I just have to accept that doing what I can is good enough and not to think about previous times.

We had a lovely day for the most (apart from a few small hiccups of lost recipes and no boys in the kitchen etc). Started the day with Christmas Mass and then home to prepare for our guests and our Christmas lunch. We had a lovely dinner with food a plenty and were still at the table talking and enjoying the company till late into the afternoon. Crackers were pulled, presents were opened, jokes were shared and the mood was merry.
I was thoroughly spoiled with many presents, my Mum always spends a lot of time deciding on what a person may like and I got some really lovely gifts because of her thoughtfulness.

I had uni friend stay for Christmas-her first, I found out she would be alone for Christmas and although she doesn’t celebrate it I didn’t want her to be alone for the holiday. I think she enjoyed her time with us and it really helped keep me busy (although I found it hard work) so that I didn’t spend time missing my best friend too much. We are very close and with her having just moved to London I am rather lonely at times as I miss her so much. My uni friend helped me decorate my room, and wrap presents and it was nice giving her gifts and a Christmas stocking and including her as part of the family.

I’m glad we still remember what Christmas is all about despite the tone of this time of year. Despite the stress it creates we are still able to find enjoyment and take time to remember its more than just food and presents, it’s a special birthday celebration that we must never forget.

Hydrotherapy week 3 (belated)

Week 2 has come and almost gone so this update is a little late, but better late than never!

Physio's comment "you make it look so easy" and my reply "well its not"...

I think that tells you that I am still progressing well as far as she is concerned and now on top of my original routine of torture, she has added hopping on each foot in the water.
I wasn't too happy with this addition and almost didn't make it through but she is full of compromise and fiddles about with things so I ended up being instructed to spend half a length hopping, then half a length kicking on my back, then half a length kicking on my front and then half a length hopping. That way I don't spend too long on any one thing (and don't have any excuse to not do them lol).

Tuesdays session with T (the physio) was spent talking for a bit rather than all in the pool this time, as I needed a 'lecture'. I had something happen on Monday and completely lost it, I broke down and spent most of the day in tears. The pain wasn't even as bad as it gets, I just couldn't handle the combination of things that had happened.
T say's that its all good to be taking a break but I still need some structure and that its very important that I make myself socialise. I have no routine and I basically spend most of my time with my family.
In the long run this is going to be more bad than good as in just this amount of time I have lost hold of all the coping mechanisms I had in place during semester. I can see this has happened, I have almost no energy to make myself do anything!

She said its very important that I try to do as many things that would be normal for someone of my age and because I tend to be more antisocial, this is one aspect I need to work really hard on.
I also need to find some voluntary work (which will fit around my life) as this will provide some structure, socialisation and help me regain my lost coping mechanisms. I've also planned some time away from my family for a break in the New Year, so I am looking forward to that.

Its amazing how in such a short space of time you can loose hold of something you never even thought you had...I now see that the hectic life of university was allowing me to cope well-because I HAD TO. Now that the pressure is off, I don't really have to do anything and so I am finding it increasingly difficult to do anything.
The trick will be to find a balance between these two poles so that I get the time to rest and recover that I need, but still retain the coping skills and motivation that is also as if not more important in the long term.

Grant me patience...

Why does the boy (brother number 3 of 5) decide to turn up his music (so called) just when I get in to bed needing to get some sleep?

Honestly I thought we were having an earthquake just now as my room is shaking! Brothers-no thought about anyone else at this hour of the night and its happening regularly.