One Step Forward.....

One step forward, two steps back is what they say isnt it?
This week it certainly feels that way.  I am walking about without the stick now, feeling much more confident as the days move into weeks and am beginning to feel normal again.
So, when an achy neck and shoulder gradually gets worse and feels so bad it is keeping me awake at night, I figured I would see the doctor.  The pain radiates from the neck and down the right arm, all the way down to my thumb which has now lost feeling, the numbness and tingling has just touched the two fingers close to the thumb.
Am starting to worry now.
The doctor prescribed Naproxen, a stronger version of ibuprofen I think.  His words then were; if it doesnt improve after Easter, come back and see me and I will arrange a scan as it could be the C6 and C7 disc pinching the nerve...... oh god, dejavu.......
The week has progressed as has the pain and the tablets, although making me feel sick, have not done much in the way of pain relief so I rang the surgery and asked him to call me. 
Perhaps I am paranoid, but gut instinct has now told me to listen to my body and something just isnt right.
He rang me back, still I feel paranoid but he is ok about it, can I travel to Bradford for a scan? It would be quicker than waiting? Absolutely yes.  It's not booked for Friday 13th at 9am.  I am hoping the date isnt a bad omen!
Fingers crossed this can be dealt with quickly and non surgically, I really have had enough of hospitals for a while now!
Now I just have to sit and wait to see what the outcome will be - keep your fingers crossed for me xxx

6 Months Post Op’s – Time to Reflect

So, it’s my 44^th birthday.  Last year on my 43^rd I was adamant that I didn’t want to be 43 as it had a bad feeling – they say trust your instinct and I certainly felt it was a bad number! 

It’s hard to imagine that it is now just a little over 6 months down the line from the operations, all of those days in hospital seem a lifetime ago and life returns to “normal”. 

Physically how do I feel?  I have now removed myself from all the pain killers.   I now just rely on the Pregabalin for controlling the nerve damage in my legs, by taking these a couple of times a day, it seems to have calmed things down, although they do feel like they are on fire but they aren’t as jumpy!  The rib cage is still very painful and I sometimes feel a dull ache in my back, but if I can handle this on a day to day basis with the occasional help from over the counter pain relief, then I think I have come a long way. 

Last week I started walking about without the walking stick.  It folds up into my bag and I like the reassurance at the moment that it is there; I still get tired but that’s just down to general fitness and I think that once the good weather has arrived things will improve considerably and we will be able to get out and about and walking again.   I concentrate when I walk and make a conscious effort to try and control the steps and not become lazy when I walk.

Mentally I have a few issues with what has happened to me.  There are always people who are worse off than you however some days self pity and self loathing do take over and I do get down about what has happened.  Maybe it’s impatience on my side but I want to be back to my normal self again, right now.  I sometimes sit and have a cry, looking at the picture on my desk that was taken in London, I wonder where that person is, how much I hate the body I am now living in and feel that there is a further battle ahead in trying to get back to being that person.  I know I can do it but there are some days when it really doesn’t feel like it. 

I know above all I am thankful for what the surgeons did for me, their swift actions into operating that have ultimately saved my legs; nurses and doctors who helped me through those days; the support of my friends both near and far and colleagues who keep me smiling and are there for me when I feel a bit tearful at work and give me a hug; to the “Facebook” family of friends I have and their support over the last few months and their lovely comments when I am having a sleepless night and post messages (and I thought it was only me who had sleepless nights!)  Most of all I have the love and support of my family who have been strong and brave throughout this.  Their never ending patience with me (being a bad patient!), their constant support to friends who have asked and wanted to know more, for carrying on with their day to day lives and still making time to come and see me and look after me. 

I am now looking forward to a fresh start, renewing my interest and work in photography and taking each and every day as it comes. 

So today I feel I am allowed to celebrate my 44^th birthday – life begins at 44 now!!!!

A New Year and a New Start

Happy and settled at home, I went back to work full time after Christmas.  Initially I struggled with the days and felt tired, but gradually my strength came back and I felt a lot better, in fact, I think work progressed me to a certain degree. 

However, there was a further downside - just when would things go right?  My hair had started falling out and I didn’t know why, I thought maybe it was the medication but I had been on it for such a long time I figured my body would be used to it.  I went and had blood tests and they all came back normal, thankfully.  I didn’t want to start the year with another problem.  I then talked to the practice nurse, who said that the body had been through so much trauma that usually about three months after such things, it closes down and tries to repair the body where it is needed, i.e. The ribs, lungs and heart etc.  Now while this is all very well, any woman will know that your hair is important and is more visible than the inner organs and I was pretty devastated by this new setback.  My lovely hair, which I took pride in, was looking pretty sad and sorry for itself and coming out in handfuls.  However, once I realised this would be a short term thing, I stopped worrying.  I figured that if I worried more, the worse it would be.

Gradually, I am pleased to say it has stopped falling out and is starting to grow back.  I have been taking Well Woman tablets to boost the vitamin intake, just give the inner healing a little help!  My next aim is to tackle the steroid weight which seems to have settled around the body.  Hopefully with more movement, this will in time come off and I will get back to how I used to be.

I have reduced the medication now to just one Tramadol a day and intend to drop that by the end of March.  The ribs still hurt but each day it becomes a little easier.  The legs are getting stronger, and although a little lazy with the physio exercises I realise the importance of these to get the body to a place where it will naturally be – the surgeon said that by about 18 months post op, however I am at that stage is where I am likely to be for the rest of my life so it is my intention to help it as much as I can.  This isn’t always easy when you get home from work and feel tired and want to fall into bed!  Mark bought me an exercise bike and I am going to use it more to strengthen the legs.

I have a holiday to look forward to in May, a week in the sun, and I think we deserve a little bit of “time out” after what we have been through, both mentally and physically.  I still have issues with my weight which is still there after the steroid intake, and I know it isnt the end of the world, but I dont feel I have any body confidence now.  The shape I am, the way my legs work and how I look; I need to get myself into a state of mind that will improve positive thinking.

Christmas 2011

Work and Normality

I decided to go back to work at the beginning of December.  I had been off for three months and I needed to be paid a normal salary again. 

Initially, I was going to go back full time but I started back on the Monday, and by the end of the day I was exhausted.  I had moved office (still on the third floor!) and everything had changed round.  I was tearful for most of the day, and felt like a fish out of water, I wanted to go home and feel secure.  I spoke with my boss and agreed to do three days a week until the New Year when I would see how I was.  This worked better for me as I could have Tuesday and Thursday to recover.  I was still on heavy doses of Tramadol, Declofenac and Ranitidine just to keep the pain at a level.  Once New Year came however, I was determined to drop this dose down bit by bit and manage the pain level myself.

Working in the office all day and then starting again at home was tiring.  I felt physically and emotionally drained.  I would cry at anything and some days the pain in the ribs was so intense I didn’t know what to do with myself.  My legs felt useless and I would go through stages where I felt sorry for myself.  I did get told once to “stop feeling sorry for yourself” but to be honest, I felt I was entitled to feel like this once in a while after what I had been through!  I had sleepless nights and often lay awake thinking back over the last few months and how things had changed in my life.

I had up and down days; my mood swings were frequent and I would cry for no reason.  I think sometimes it was just sheer exhaustion that did it and I looked back to when I was a child and wanted that security again, of not being in pain, of being "normal" and not wanting to be responsible any more.  It seems a strange feeling to have but there were days when I really wanted to give up on everything.  This was hard on my family at times and it was hard to try and explain how I was feeling, I don't think I ever did, it's sometimes just easier to pull yourself together and live with it.

I no longer had the ability to run, (not that I was a runner!) jog or even get myself up and down off the ground easily.  I had to learn how to walk properly, how to make sure my foot wasn’t rolling to one side, think about straightening my body and the alignment of my hips!  No one teaches you to walk when you are a child so it is so un-natural to learn to do it as an adult!  I wonder if I will be able to do the things I used to; outdoor photography, portrait work, did I even want to?  I felt a long way off from wanting to do anything to be honest.


Mark bought me a car for Christmas, we traded in the sporty Puma and got a practical car in which I can get in and out of. I love my new KA and started driving in January this year. :-)

My new KA - a fresh start driving again.

Progress

Physio continued from Louth Hospital on a weekly basis, I was given exercises to follow and goals to aim for.  I also had an appointment to see my Surgeon on the 23^rd November in Sheffield, I was determined to be walking by then.

When we arrived for our appointment, I was wearing the knee brace, I was using ONE crutch to walk with.  When I was called in for my appointment, I stood up and walked into the room.  The registrar who I was seeing said he was amazed to see that I was walking,  he said that when he called me, he was expecting to see me in a wheel chair and totally incontinent, having read the notes on my hospital file.   That made me feet ten feet tall knowing I was a little bit ahead of what they were expecting!  He talked to me, checked my wounds which were now healing well and then Mr B came in to see us.  He too was amazed at how well I was, quite dumbfounded by the recovery I had made to date, being as it was only two months post op and the last time he saw me I couldn’t walk. 

I explained about the nerve damage to the right leg, and they both suggested a drug called Pregabalin which should calm the nerves.  I was already on one that my doctor had given me but felt it was not really helping. 

He was pleased enough with the progress he said he wasn’t needing to see me for six months.  Six months!  I most definitely would be walking by then and hopefully with no limp, or dragging the foot. 

When I walked out of that hospital, I felt such a rush of enthusiasm and hope that by May 2012 I would be in a much better position and hopefully on the way back to normality.

Scars are healing well.

A New Lease of Life…

Ok, so I could say life returned to normal?  No.  It took a lot longer to get anywhere near. 

The first two weeks whilst the legs were still weak, I had to have help getting in and out of the shower.  Dad fitted me a hand rail on the wall above the bath which proved invaluable. I could dry myself and do everything I needed, but that was it.  Mark was at home the first week and would help me on the stairs as I concentrated on each step, mentally going through the routine we had done in hospital.  Laura was with me for the second week when I became a little more confident about the house.  However, if she went out I would make sure I was sorted and didn’t need anything and stay in the bedroom.  I felt so useless and I think I was a little hard on myself in expecting things to return to normal almost immediately; when you are used to doing your own thing then it is harder to rely on other people.

On the third week, I was home alone.  I had the community nurse coming in to change my dressings and Yvonne would call round to see me.  I would then be downstairs while I had company.  I made sure everything was done before getting back upstairs and staying in my safe haven until either Mark or Laura returned home. 

One day when I was able to get myself in and out of the bath,  I decided to have a soak, Mark was due home late and Laura was out so I thought a bit of relaxation would help. Hmmmmm, hadn’t really thought that one through though!  I filled the bath and got everything to hand, stepped in with the right leg, held onto the rail and lifted the left leg in to find the water temperature WAY too hot.  That was the day I discovered the nerve damage in the right leg was severe and I had no sensation to hot or cold.  Not the best way to find out however!! 

Once sorted, I got myself sat in the bath and realised that with the dressings still on the back, I wouldn’t be able to lie down, thus realising it wasn’t going to be such a relaxing time after all.  I made the best of it and then decided to get out, another dilemma!  Two legs which were un-co-ordinated, didn’t know how to get out of the bath!  In the end, I drained the water, got myself onto my knees and then pulled myself up with the rail and the side of the bath.  Wasn’t going to try that again in a hurry!

I soon learnt to do housework things as I became more mobile, and with the aid of daytime TV (it bores you so much you WANT to do housework!) I managed to do a little ironing, washing and even cleaning the fire out with the use of the Zimmer frame to help me up!  By the time I had done even the smallest chore, I was ready for a rest but it was progression. 

I lived for the weekends when we could go out.  The first weekend we went out was football that Mark coaches; I spent the entire morning sat in the car watching the autumn leaves blow around, the sun was bright but the air was cold, it didn’t matter, I just loved the feeling of the open space. 

Being out in the wheelchair was another thing though.  Despite my initial thoughts on not having one, reality was that I needed one.  I was unable to walk any distance so if I wanted to go into town or to the shop, I had to use one.  After calling into work one day to see everyone, we went for a walk around town.  I got so upset at not being able to get around, the pavements being uneven and hazardous, the roads intimidating and the shops inaccessible, we gave up and came home.

Even the run up to Christmas saw me getting equally frustrated at shops.  I was good at manoeuvring my vehicle but shops packed their displays so tightly, I often found myself stuck.  Mark would joke that he knew where I was because he could see something moving and not see anyone standing!  I realise how, as a nation, we are not disabled friendly with card machines at silly heights, displays not accessible and worse still, the attitude of people towards a wheel chair user.  Mark generally pushed the chair and shop assistants would speak to him instead of me.  That was something that angered me immensely.  I was in a wheel chair, my disability, albeit temporary, were my legs not my mind!  Even other shoppers were less than patient with the wheel chair – I challenge anyone to spend a week in a wheelchair, let’s see if their attitude changes then!  I also noted that people would be less considerate when parking vehicles; I don’t have a disabled badge and don’t intend to get one, but people seem to abuse them, I now have a different understanding of disabilities. Rant Over!

Autumn

Homeward Bound

We drove home on the Friday evening. It was a lovely evening but I don’t remember much of the journey; I was sat looking out of the window, looking at everything I have always taken for granted, our beautiful landscape, seeing people running, walking laughing, life going on around me as it had been whilst I was in hospital. 

I am not ashamed to say that I envied people with “working” legs.  I hated how mine had become, hated seeing what the steroids had made me into, changed my shape completely, and although I was now off them, and they had helped reduce the swelling around the spinal cord, I resented them for this body I was now living in. 

Although mum had prepared food for us, what I really wanted was a curry, so we stopped and got an Indian take-away.  I was so used to bland (although pleasant) food in hospital; I really wanted something with flavour.  We had mums dinner the following day J

Going home was very strange, almost alien like.  It felt so odd walking back into the house I had left six weeks previously.  My cats were a little apprehensive about me being back and whilst Mark unloaded the car, brought everything in and settled me down, I sat on the sofa and cried again.  I don’t know why, emotion just over took me.  I was scared about being out of the security of the hospital where everything was safe and done for me if I needed.  Now I had to learn to, quite literally, stand on my own two feet. 

That night in bed, Mark and I held onto each other; our own peaceful sanctuary, just the two of us.  We didn’t have to talk, I don’t know what he was thinking, but I just thanked god I was alive and home again and with a little bit of work, and the help of my surgeon, I had my legs back and that, a start of a new future.

New Legs