Made the very difficult decision that I probably can't return to my job - I'm devastated.

Clare, I went though having to accept i could not keep living on pain killers and had to leave the profession I loved. I had CBT which really helped. I kind of mourned the loss of my job and lifestyle and learned that a new life goes on. Give it a try. I know how tough it is
 Anne

Hi @ClareG81

I just wanted to pick up on something you mentioned - 'It's so depressing living with something chronic right?' Yes to a certain extent. In the morning it currently takes me 25 minutes to get to the station to get the train to work, in the evening it takes me up to an hour to do the same walk back home.  By the time I get home the pain is aweful and there is no quick relief. 30 minutes lying on my back increases the pain to begin with and is uncomfortable while my back relaxes. I get my dinner out of the microwave and then start thinking about getting to bed. Restless leg syndrome, cramp and having to go to the toilet means I don't get a full night rest.

That doesn't get me down, what gets me down more is when I think about the times I spend with my daughter. We enjoy going to see musicals together, but after the last time I had to let her know that I probably would not do it again simply because of the pain levels. The last one was to see hamilton, I remember very little of the show though we had waited months to go. I worry that most of her memories of her time with me are coloured because I have to struggle to cope rather than just enjoying what is going on.

But as you mentioned it is about changing your frame of mind, being positive and realistic with what you can do. For years I have wanted to do a boating holiday on the Broads. I now have the money to do so and asked my daughter if she would like to go on  holiday with me, the wife has never wanted to do this. A couple of days later my daughter had us booked for the holiday in October. For some reason coach is quicker than train so we will get a cab to the coach station, spend the afternoon and evening in Norwich the night before meaning we can have a relaxed 15 minute journey at the end to begin our holiday. I don't expect the holiday to be pain free, but will mean it won't be a major feature of our time together and hopefully my daughter will build a lot of happy memories. Probably at my expense trying to dock the boat. This year we are only going for four nights and when the Broads are less busy, but if we do enjoy it then we will look at either doing a longer period next year, or perhaps two short breaks.

I guess I was lucky in some ways as I was told early on - three years after the sciatica had become an issue - that I would always be in pain, it was only a matter of how much and how I coped with it. I have also been lucky that because my current employer took me on because I have a disability and I have had very understanding managers. My current manager has been a diamond, working with me to get adjustments in place to help me cope, and which helped to reduce my sick leave. 

My view is I would still be in pain if I was in or out of work, work helps to give me focus and purpose. It also helps me to live at a comfortable level where I still have to manage my money, but earn enough for little luxuries which make the pain worth while for me. I guess the trick is to focus on what is important to you and finding right frame of mind for you to make it work, and being realistic about what you can cope with at work, and looking for alternatives if necessary is part of that transition. 

Good luck.

Would you consider accessing Access To Work or the job advisor on SCOPE to help you think of ways around your work and staying out @ClareG81 ?

Hi @ClareG81

The last I heard there is an issue with L4 and L5 (I think). There are two pains I get, one is a constant dull pain that can increase during the day, the second is a sharp pain which I normally experience towards the end of the day. But it does go in cycles and winter seems to be worse than summer.  I get the occassional sharp pain going down my left leg, feels like liquid fire suddenly shoots through my leg. Fortunately this pain is over very quickly and while I start to stumble I can usually stop myself from falling. More often I get a warm feeling going more slowly down my leg, when it first started I actually thought I was wetting myself.

On top of this if I sit too long I can go numb from the waist down so at home at least I will suddenly get up and walk to the end of the kitchen and back. Early morning I find very difficult as my leg muscles have contracted over the years and I find it difficult to stretch my legs properly, so the first dozen steps or so I am very unstable. This happens at work but not to such a great extent, but my walk is awkward or on occassion I will immediately fall back into my seat if I get up too quickly. More than one medical person has told me I have the legs of an athlete - I wished!

I have similar issues with the lattimus dorsi muscles. Not much fun when you laugh and your suddenly in a lot of pain, but life is too short not to laugh. I have love hate feelings for Jeff Dunham and his puppets!