I have felt very strange this week. I have been more than usually resentful of my rubbish body and my limitations. I normally have quite a good handle on what I can and can't do and this week I felt like ignoring all of my experience for some bizarre reason.
I had two appointments at the start of the week that I had no choice about cancelling. The first was an appointment with my consultant on Monday, and the second was my Pelvic Pain Support Group on Tuesday.
My support group is in the process of being wound down. The woman who normally facilitates the group is on maternity leave and she has not been replaced, so other employees are having to pick up her work. Instead of having a monthly meeting we were having a meeting in June and one in September and then no more, even when the normal facilitator comes back. I am really angry about this. Apparently because the group is not a "treatment" with a finite end to it, they don't want to fund it anymore.
The stupid thing is that if this group had been made advertised more effectively and been made to work properly, as a form of counselling and a way of teaching coping mechanisms then this could have been made to work as a form of treatment. Instead sufferers of pelvic pain are left to fend for themselves or to try and get individual counselling, which is nigh on impossible.
As the group is being wound down, the only reason I have gone to the recent meetings is because I know that it helps the others if I am there. I am getting nothing from the meetings except an overwhelming feeling of rage and frustration that our NHS is being dismantled. The group may not have worked properly, but if it is running there is a chance of being able to correct it and get it helping lots of women. If it is cancelled, then who is is helping?
One of the women in my group did not even know about the changes in the welfare system. She had no idea that she is probably going to lose her money. She struggles financially as it is, as she has hospital appointments all around the country, with various specialists. She can't travel on her own, so her husband has to take time off work to take her and the travel is incredibly expensive. They are trying to manage as best they can on the money they have, which includes incapacity benefit and they are still struggling. When that money is withdrawn, my friend will not be able to get her hospital appointments.
I think, with hindsight, this meeting filled me with massive amounts of negative energy that I wanted to expel. Instead of resting up after the meeting and doing something positive like knitting or sewing, I went shopping, for the first time since the op.
I bought some nice things, but I didn't have to do it the way that I did. I could have been sensible and accessed the shop mobility scheme and got around town on a mobility scooter. Alternatively, I could have asked my partner to take me shopping at the weekend and have him push me round in the wheelchair. I decided to do neither of those things and I am still paying the price of my anger and frustration.
I made the mistake of trying to walk around some shops. I stupidly entering a shopping mall to get something to eat. I knew I wouldn't be able to get out unless I walked for what I knew would feel like miles. I had to stop at every available bench or perch. I KNEW I couldn't walk that far. I KNEW it would make me fall over for days, if not weeks, and I did it anyway because I was so angry at the world and my body that I decided to punish it. I pushed myself beyond my limits and I am still paying for it.
My body is rebelling. I don't blame it. I was stupid. I wanted to do things that I used to be able to do, because my world is falling apart and my place in it is uncertain. It is so stupid because the only person I am punishing is myself and the people who care about me. These are the people are getting less of me because I was angry at my body. It was stupid and childish and I should know better.
I know that I am lucky that my partner earns enough that if I lose my benefits we won't starve, we won't lose the house and we will still be able to afford heat and light, and to continue to run a car. Instead of being relieved about my own good fortune I am getting angry and I am grieving over everyone else's struggles. All the people I have come to know through the internet or my support group, or the people I see in the hospital waiting rooms, it is them I am angry about. They need someone to fight for them, because most of them don't even know that this going to happen, like my friend in the support group. These changes have received so little media coverage that most people who struggle to get out of bed every day are going to received a massive shock. They will open a letter in a few months time telling them that they are going lose a massive proportion of the income that is coming into their households. Can you imagine the devastation and the despair that will cause?
So all of these feelings have been bubbling under the surface and instead of taking them out and looking at them and dealing with them like a grown up sensible woman, I decided to push my body beyond it's endurance on something as STUPID as shopping. It wasn't for a family member, or a dear friend. It wasn't for my partner or any other valid reason. It was because I was angry and frustrated about my limits, so I decided to ignore them until it was too late.
So all in all, it's been a bit of an odd and angry week.