Dilemna

I met with the consultant yesterday and I am seriously considering surgery. He is not entirely happy about doing it because he says it's not a cure and keeps stressing that I have to make long-term changes to my lifestyle. He thinks that if I have the op I will carry on as before, but I can't remember what I did before. Does he mean I have to give up work? Well I work from home anyway. How can he tell me to change my lifestyle when he doesn't know what my lifestyle is? He definitely thinks I'm neurotic but David thinks its because I was talking very loudly in his room and he is a very quietly spoken man.

Here's a lesson, adapt the speaking tone to match that of the person you are speaking to. That has never occurred to me before.

He explained what the fusion entails, mainly for David's benefit because I know it chapter and verse from the spine universe website. He also stressed that the op will relieve the pain in my leg but not my back. I don't have much back pain though, it's mainly starts in my buttock and then radiates down my leg. The pregabalin is definitely taking the edge off the stabbing pains in my legs, but it's strong medication, it spaces me out and I'm putting on weight, which I hate.
I'm just going to have to see how I do over the next few weeks while I try and increase my activities.

The fusion has got an 80% chance of success, a 10% chance of not working and a 10% chance of making me worse. My options now are

1. To have the op in the next few weeks if the pain worsens
2. Wait another 4-6 weeks to see if there is an improvement, and if there is, just take the meds and manage my flare ups as and when they happen.
3. Wait another 4-6 weeks and if the pain has not improved radically, have another epidural.

But can I wait another 4-6 to see what happens and then go all the way back again.
I think I'm going to monitor my leg pain and that will be the the deciding factor.

1. Wait
   

The Experiment

Finally got my appointment with consultant for Monday at 2. So until then I have a plan. I need to tell him what is going on with me when I am trying to get back to some sort of normal. That means doing a few jobs round the house, doing a bit of cooking and trying to do some work. I know that I won't be in pain if I am sitting on my tush and resting but that isn't real life.

The Results So Far

Yesterday: Sat at my desk and did some work for about three- four hours with a lunch break.
Went for a 10 minute walk.
Did my exercises.
Made a bit of kedgeree from some leftover salmon.
Result- by 7.30 pm was in pain and had to take painkillers and had go to bed. Watched A Mighty Heart.
Today: Did a bit of cooking, made roasted carrots and sweet potatoes and a challa pudding with ginger and apricots. By 12.30 was feeling neuropathic pain in shins and had to sit and rest. Wobbled quite a lot while standing.

Drove for 1st time to have nails done. Not a good idea, could feel nerve pulling all the way down my leg. Drove back via Morrisons to get some money from ATM. By time I got home I was in a lot of pain. Spoke to David and he wanted me to do a job concerning the car insurance. The file he needed was on a shelf above his desk and I had to reach up to get it, it was really painful and I couldn't find the file he wanted, he started yelling at me and I just burst into tears. He hates it when I cry, especially if he's driving and he was getting upset too, not a good idea when he was travelling down to Milton Keynes for an important meeting with Argos.

After I put the phone down I just howled, tears of pain and frustration. I just want to get my old life back or even half of it would be nice but I guess its not going to be for quite some time. It's so hard to concentrate on anything when I am in pain which is why I've not been able to work for such a long time. I sometimes feel that I am so alone with it, I know I could ring any one of my friends, but everyone is busy and I just have to deal with this myself and pull myself together. Right now I just need someone to put their arms round me, comfort me and tell me that it's going to be alright.

Losing It

O.K, so I lost it this evening, I stood in the utility room with its broken, flashing on and off fluorescent light and howled so much that my tears trailed down my face in mascara stained streaks.

I lost it over a Tupperware container of soup.

My friends are incredible, over the course of the last few weeks, food has been arriving regularly to our house. I have hardly cooked a meal in the last four and a half months. I have to match my desire to cook with my inability-( its hard to cook on two crutches) and feed my frustration by watching the UK TV Food channel for at least two hours a day!

Anyhow this evening, after two deliveries of meals and one of soup, I decided to put it all away. Poor David had slumped in an exhausted heap on the couch and was definitely not ready to tidy up from supper, but the piles of foil dishes mounting up in the kitchen were irritating me so I decided to take matters in hand. I started in the fridge. Why is it that people are so useless at organising fridges. Its quite simple, in my fridge, dairy items goon the top shelf, jars and bottles on the next, prepared food on the next, fruit on the next and veg below. In the the left drawer are apples, pears and plums and the right contains citrus fruit. The shelf below contains cucumbers, celery and things like peppers, chili and ginger. The shelves contain eggs, milk, random sauces and milk. Not exactly rocket science. So why is it only me who gets it? Why is nobody else able to put items in their correct positions?

So of course I reorganised the fridge, nor a clever thing to do, I'll admit but I couldn't stand it! Then, already in pain I tried to carry various items to the freezer in the utility room. I couldn't even carry a foil dish filled with spaghetti bolognese! So David had to help me and then realised what disorder my freezer is in. I don't know what I've got and there's so much stuffed in there already. I tried reorganising a few shelves, tried to pick up a rigid Tupperware container filled with soup.. and couldn't, and dropped it. This triggered David into yelling at me and me to start crying, tears of total frustration and helplessness.

David can't bear it when I cry, he just can't deal with it. He can't deal with my situation and he can't cope with me. It's as if he too is suffering from my failing back and its just too much for him, I know that. My back hurts us. When he can't cope he goes into denial, and when I cry or am in pain, he sends me to bed, because if I am up here in our room, where he can't see me, he can watch T.V and block it out. I feel rejected, he can't comfort me, he's happier when I put on the brave face, the courageous face, the smiley face, the face most people see. I feel shut out, alone, I have to deal with this myself.. I have started to put on weight after all these weeks of resting, and now for no reason feel fat, ugly and rejected. I am sick of this story, I am sick of telling my tale, I am sick of having to give status updates every day, I am sick of having to be patient and having to wait this out, I want my life back.

Two Crutches Phillips

Got off to a positive start this morning. Did my exercises, went for a walk with Hilary, for about 15 minutes. A beautiful but cool May day, sun was shining, sky was blue and it is one of the days where everything seems so vividly coloured and there is a vibrancy in the air. There was a stiff breeze and I wore no tights, but it felt so good.

After Hilary had gone, I tidied up our bedroom, as usual it was clean but all my books and DVD's and papers were all piled up on the window ledge, about to tumble, and no order to anything. Stuffed books in overloaded bookcase in the bathroom and gave Lisa a freeby DVD of a film I had watched.

Jill came for me at 12 and took me to Maccabi where we were meeting Rhona for lunch. That was when my leg gave way, just as I was walking into the restaurant. I had stubbornly decided to leave one crutch in the car to see if I could manage.Well I couldn't and lurched my way to the table, bent over double and holding on to the furniture for dear life.

Ate far too much, again, and I am starting to put on weight now, the inactivity is catching up with me. Yummy leek and potato soup, much better than the soup at Brackmans, which is always the same!

By the time I got back to the car I was exhausted and needed two crutches to get around after that, was really struggling to stay upright. There was no pain, just an incredible feeling of weakness and also the drugs have completely spaced me out. No chance of driving yet.

So here I am, back on my bed, finished for the day at 3.30 in the afternoon and wondering how long it will take for me to get back to normal! Is this as good as it gets? Because it's not good enough for me!

Back Story

The story so far...
Woke up Jan 5th with sciatica, thought nothing of it and went to gym
Jan 6, 7- pain got worse
Jan 8 went to GP who diagnosed...SCIATICA and referred me for physio
Jan 9, physio diagnosed prolapsed disc, told me to rest...
rested and rested but pain got worse
Got referred to Neurosurgeon 1 who sent me for MRI. Which showed a deteriorated disc in L5/S1 and a grade 1/2 spondylolisthesis (slipped vertebrae) in L5/S1.
Feb 2 Had caudal epidural
Had good 2 /3 weeks, with physio, but then pain came back so was referred to Neurosurgeon 2.
Mar 24 -sent for dynamic X rays of my back which showed slip had worsened. Was also prescribed Gapapentin for the neuropathic pain.
April 6th Consultant changed Gapapentin to Pregabalin because it brought no pain relief and made me feel spaced out. Agreed to another epidural, on May 1st. While I waited for the epidural the pain in my leg got steadily worse until I was dragging my leg and needed two crutches and eventually, a wheelchair.
May 1st- had the epidural and when I came round from the sedation, found that my legs were numb from the waist down. This didn't wear off for six hours and only then was I allowed home.
Its now my 10th and I'm waiting to see if the epidural has long lasting effects, otherwise I'm going to need a fusion, which is a major operation.

I'm trying so hard to be optimistic and hope that in 6 weeks I will be back to normal but its been four months since things were normal and I've forgotten what it feels like. I suppose what I should expect is a slow, steady improvement and no or little significant pain. But I've lost my confidence in my functionality. Four months is a long time to be so inactive and not so out there like I was.

What have I learned so far

1. To be patient, with myself and others.
2. To accept that I am not in control
3. To accept that the world carry's on its business without me actively in it.
4. Have tried to develop empathy for others who are disabled in any way.

I am so fed up of telling my story over and over again I think it may help to write this blog and take my frustration out here rather than on people.

I have such strange feelings. Surely if this is going to work and I am going to get better, I would know it in my guts, I would be excited about tomorrow and the progress I will make and my slow return to normality. But I don't, I wait for the pain to return. Why don't feel optimistic? Shouldn't I be optimistic?