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.

Thursday, 2 February 2012

Missing in Action.....

I know I haven't posted very much here over the last few weeks, and I think I probably should have been doing.  Not for any reason other than my own sanity, but I should have been writing down what I was feeling to help me process it.

The last few weeks I have basically spent inside my own head worrying and feeling down.  I won't use the word depressed because it wasn't that bad.  As someone who has experienced depression, I know how I'm feeling is not as bad as that, but it could lead to that.  I don't want to let myself walk down that road again, it's horrible.  And now I know what I need to do in order to avoid descending into darkness. 

  1. I need to look at how I'm feeling.  
  2. I need to talk about it
  3. I need to accept that those feelings are valid, and 
  4. look at ways to change why I am feeling that way.

Now I can certainly do the first three.  Though it did take a while to get to number 2!  Essentially I have two major problems.  The first is the same as most of the sick and disabled people in the UK at the moment, our world is being demolished by the Government and it is breaking my heart to see what this country is capable of inflicting upon it's most vulnerable.

The second problem is more selfish.  My pain is getting worse again.  Less than 12 months since my last surgery and I'm struggling with the pain caused by adhesions again.  I had been experiencing discomfort for a few months, but these last few weeks have been really unbearable.  Trying to adjust to the new levels of pain has made me feel so despairing that this merry-go-round is about to start again, that I have found it hard to focus on anything but the pain.  I've wasted several days unable to read or craft and that is really unusual for me. 

So now I have looked at how I'm feeling and have accepted that it is normal to feel this way.  I shouldn't be ashamed of those feelings.  They are not a sign of weakness, they are a sign of sanity!  Any person who did not feel frustrated and sad and lonely in these circumstances is probably not wired right, or is on a much higher plain than I am! 

So I guess it is now onto step 4.  I feel so overwhelmed with the problems of the Welfare Reform Bill and what it is going to do to the people I have come to know through the Spartacus Report group, that I just don't know where to start.  I think that is a common sensation amongst all the hard working campaigners.  We fought so hard to get just a tiny bit of decency written into the Bill, and then the Commons stomped all over it yesterday.  It feels like we have been beaten into a pulp by the school bully after we thought we had got them expelled.  So  I guess with this problem I am going to go away and let my mind sift through the ramifications, read around other people's blogs and see how I feel in a few days.  At the moment though, I just feel pummelled emotionally.

With the other issue I have decided to take a more proactive approach.  I have made an appointment to see a GP next week and I am going to discuss ways of tinkering with my medication to give me a way to top them up when I have break through pain.  This is my biggest issue.  When the pain gets really bad, there is nothing I can do except go to bed and cry.  I need to be able to do something to help take the edge off it.  I think there are ways of doing that as I am not totally maxed out on ALL my meds, just some of them.

I've also downloaded a pain management app to see if by keeping an eye on where my pain is and when I feel it, I can work out ways to alleviate the pain through pacing.  I don't know if it will help, but at least I will have something to show the Consultant when I next see him.  I am going to try and ring the clinic and see if I can get an earlier appointment because I need reassuring that these adhesions are not going to kill me.  Having a detailed record of where my pain is located and when will be a useful tool to take to an appointment.

I think since finding out that my last surgery alleviated a condition, that could have killed me, I have become a lot more nervous about having adhesions.  I used to think it would just cause pain, but learning that a bowel obstruction can be lethal has made me more jumpy about it.

At least with my own health I have things I can do to improve matters, providing I approach them in the right way.  I can't do anything, on my own, about the Welfare Reform Bill, but at least I can start managing my pain better.

Wednesday, 18 January 2012


Yesterday I was so depressed.  Firstly the DWP finally issued the PIP Assessment Thresholds and Consultation Document.  Benefits and Work have written up a review of this document, if you want a smaller version.  If I read this right I think I would only be eliglble for the Standard Rate of Mobility.  It is hard to interpret the thresholds clearly.  I also don't know what this would mean in monetary terms, or whether I would still be able to get my Blue Badge.

This kick in the gut was accompanied by Baroness Tanni Grey-Thompson's amendment being defeated in the Lords.  This amendment, 50E, was designed to slow down the process of introducing PIP so that the fiasco of the introduction of ESA is not repeated, hurting so many disabled and sick people. 

50E: Clause 80, page 58, line 26, at end insert-
"( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for-
(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;
(b) disabled persons organisations to be involved in formulating the assessment process."

I was incredibly depressed about this defeat until I read Sue Marsh's post this morning.  I highly recommend reading this post as it clearly lays out all the concessions that Lord Freud had to make in order to defeat the inclusion of this amendment.

I feel that these concessions are a direct result of the campaigning that has occurred.  @LatentExistence put together a list of the media coverage the Spartacus Report campaign triggered on the day of the vote.

I still have to come to terms that these changes are happening.  I hate the idea and fear what is going to happen to me and other people in need of help.  It was so hard to get DLA, I fear it is going to be almost impossible to be awarded PIP. 

I shall wait and see what happens next.  Until it all begins to unfold, I can remain proud that I did all that I could do in order to fight for the rights of sick and disabled people.  I'm proud that I joined my voice with the thousands of others who wanted to stand up for themselves when the able bodied wouldn't.