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.

Week 2-Hydrotherapy

I had a follow up session at the pool with my physio yesterday. I was so tired and had no energy but I made myself go even though I was very tempted to cancel.
She was so so impressed with my progress, it was so rewarding seeing how happy she was-it made all the pain so worth it!

She said she had been worried with how I was last week and that if I hadn’t improved much or not been able to control flaring then she would recommend I get the nerve block. Since I have progressed so well, we will just remember that it is available and if required later the option is still there.
A week of doing it alone I am now able to deal with the pain much better so I can push myself and focus on what I am doing without having to stop so much. I did have points of having to stop, take a few deep breaths and then carry on but that is much better than crying. I now have better plantar and dorsiflexion at my ankle though still very stiff mid foot, she is not worried about this at the moment, we will deal with this later. So for now I am carrying on with kicking on my front and back and the walking in all directions adding bouncing and bigger steps with these. I also have to do stretches as much as I can in the water, watching my form and then some pushing off from the bottom alternating each foot as I instinctively cheated by accident!
She got me to pretend that I was kicking a ball in the water and I found this really hard-I couldn’t remember how to kick a ball! She says she wants to try and get me back to being able to, I wonder if that is really possible? Its really quite exciting the possibilities this has if I really put my mind to it.
When I get rid of this cold thing I will be able to do more but just now I’m having trouble with my breathing and coughing so I just have to watch how hard I push myself.

Its actually a lot more work than just the time spent in the pool each day too, I then have to come home and use my TENS and do mirroring to ward of flaring and I know doing this is really important in controlling the pain. And it is really energy draining so I don’t have much left in me to do anything else but as time goes on I think I will have more energy for other things as well.

Overall, I am really pleased with the week’s progress, its much further than I imagined I would come and although I know I still have a long way to go, I can see that it is possible and that I can do it. World just watch out! I have been empowered-I can see the possibilities that my pain team are opening up for me as long as I accept the challenge…

Feel the burn...

If this is what its like with the lignocaine, I hate to think how it feels straight.

I saw my pain specialist on Saturday and he prescribed a strong pain med-tramadol SR, plus lignocaine gel and Capsaicin cream. I was having a bad day and couldn’t bear him touching me and I felt really bad about it, I was trying so hard not to cry in front of him that I didn’t speak much at all really. I think he guessed that I was in pretty bad pain even though I didn’t say and they also called my physio to talk to her while I was there. He gave me the option of having a peripheral nerve block as well but I am thinking about this before I decide whether to or not to go ahead with it. He offered to do it then and there, but he was running late and I didn’t know what to decide so I chickened out. He has told me just to give them a call before the 10th of Dec if I decide to go ahead and they will fit me in. Now that I know where he will probably inject I can think about it better but I am going to talk to my physio tomorrow and get her opinion to help me decide.

Today I filled the rest of the prescription (got the tramadol on Saturday afternoon but they had to get the creams in). I was instructed to use the lignocaine gel and then the Capsaicin cream on the area that is most sensitive and painful, but to make sure I put the lignocaine on first. Well tonight I got up the courage to try it out, I liberally applied the lignocaine gel, testing to see if I could feel much and then added a bit more just for luck. Then I sparingly applied the capsaicin cream to the same area-not long after the burn started…hmmm so this is going to be interesting. I’m supposed to do this twice a day so I hope it gets better the more you apply it.

Sick of being sick...

Since part way through my exams I have had this stupid cold thing, chesty cough and now a head cold type feeling as well. I think its been over 4 weeks now? I feel dizzy, my head feels like its full of cotton wool, I cant hear anything and I am coughing my lungs up and feel totally washed out. I started taking a couple of cold medicines but not regularly (naughty me).
I went to see Jess and Hamish yesterday and Hamish commented that I sounded like a cat with fur balls (thank you Hamish)! I think I need to be better about taking the cold meds because this is not good and I feel like I am getting worse not better.

I was talking to my Mum just before and then all of a sudden a feeling of extreme nausea comes over me...I have been laying down for a while and I am starting to feel a bit better but I daren't move. This is more frustrating than anything although its not nice as well-life is so fun (not). I wonder if the combination of drugs I am taking at the moment is just a bit much for my poor body to handle.

I just hope I start feeling better soon, its hard enough to do things without feeling like this as well!