Wednesday, 9 May 2012

What Happens Next?

I have been keeping rather a low profile on here of late and I thought it was probably time to update everyone on what has been happening with me.  I went to see my GP in Feburary and we discussed ways in which my medication could be improved to help me deal with my pain levels.  The result of this discussion was to up my Gabapentin levels slowly and see how that helped and also to give me Oramorph to take, as and when it was needed, to help me get handle "break through" pain.  Break through pain is the stuff that your normal meds don't handle because you've actually done something like leave the house for more than 30 minutes.

Altering the levels of the Gabapentin has taken quite a few months to get used to.  I was very spaced out and disconnected with the world, but the pain levels became more manageable.  I probably should up the dose by one more a day, but then I'm afraid that I'll push myself too far without knowing it at the time and then will pay the price later.

The Oramorph was invaluable on a trip to see my new nephew in Dorset.  The journey nearly killed me.  I was actually lying on my in-laws sofa in tears before I relented and took the Oramorph.  I had put off taking it as the first couple of times I'd used it I'd been a space cadet for about 12 hours.  I didn't want that happen on a trip to visit the family.  Unfortunately it was a necessity.  But oh how glad I was to have had that relief.  I went from crying in pain to being able to read while lying down for a couple of hours, while my body recovered from the trip.

My mother-in-law was so shocked to see me that way that she lectured everyone concerned that I shouldn't be having to travel to see them so often and they the rest of the family should be travelling to see us.  This really touched me, as I think she initially found it quite hard to understand the nature of my condition because I always hid my pain when I visited.  Well, as much as I could.  She has, over the last couple of years, been suffering with her own health issues and I think this has made her realise that invisible illness is very real, and horrible to deal with.

It was wonderful seeing my new nephew and of course the older ones and my niece.  They are great kids and I wish I could see them more often.  But it seems that 3.5 hours in a car is now impossible, if I want to actually enjoy my trip and not spend most of it flat on my back drugged to the eyeballs.

Now I have medication to help with my pain, but my adhesions are growing.  My entire abdomen swells up all the time now and I can't bear to have anything on my waist, so I'm living in yoga pants and dresses that swamp me.  My new favourite thing to wear is maternity jeans!  I never thought I would buy them but they are close to being the most comfortable thing I can wear now.

I had an appointment to see the consultant in May, but it was moved back to June.  It seems such a long wait, but I know it isn't really.  I really hope that he can help and won't send me away to wait a while longer before surgery.  The pain is worse than it was before my last surgery, so I'm hoping he can help soon.

At least I've now got into a routine again and I manage to go to a knitting group once a week.  I have to rest up a couple of days before and after each "outing" but at least I leave the house and see other people.  These little trips are what keep me sane.  That and the Oramorph!

I probably won't have much more to say about things until June, but I did want to record what is happening right now.  I've not felt able to before now, as it has been a fight to be able to write coherently while getting used to the meds!  I'm just grateful that my GP listened to me and helped me work out what was best for me.  I felt very involved in the decisions that were reached and they were pretty much exactly what I wanted to leave with.  So big thanks go the people I've met online who introduced me to the idea of Oramorph, before Spartacus I didn't know it existed.  It may be the only thing that will get me through, until they can do surgery again.

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