The Rebellious Rev’d flexes her muscles

It’s a weird time for me just now. I’m very happy to be back in the Kerry mountains. It’s been too long since I’ve been able to take a break. It’s only 2 weeks but it’s better than nothing.

I seem to be having a bit of an extended blip. You may remember I had a couple of months without accessing my specialist ECP treatment for my GvHD. This was because my Hickman Line packed up. I seem not to have caught up since then.

My current symptoms are more pain in my muscles, joints and stomach. I’m wheezing a bit and breathless on exertion. I’ve got sores in my mouth and on my throat. I feel more nauseous than normal. My nails are splitting and my mouth and eyes are very dry. My skin is bruising easily and I have very itchy skin too. The other weird thing is I’ve taken to groaning and moaning in my sleep. It’s called catathrenia. My partner played a recording of me back. It’s like a banshee. Lol. My muscles have also got very weak. I can’t always get up stairs. If I am carrying shopping or a bag I find it impossible to get up the 3 steps to my front door. When I get up in the night or first thing I feel like my legs are not going to fully support me. The other thing I can’t do is stand unaided from a very low sofa or chair. What a crock eh?

Despite all this I am trying to keep engaging in other interests and also trying to be alongside others in the ups and downs of life. I continue to fight the unjust system that continues to underinvest in the NHS and Education. I continue to challenge people who wield their power in an abusive way. I fight on to protect my grandchildren’s school from the money grabbing academy sector.

I think when you have a potentially life limiting illness it gives you a unique outlook on life. You don’t get wound up by the little things that irritate and you learn to pick your battles when campaigning. Our lives end the day we stop standing up for the things that matter. It’s so important that I keep an outward focus and keep myself grounded. I also need stimulation intellectually. I love being asked to take services, or to preach, or to write a comment piece or blog or help one of the blood charities. I’m more than the sum of my bone marrow and blood results. I’m also an emotional being and a spiritual being. These aspects of me need to be nurtured too or else I’ll get out of balance and feel miserable.

Now having put that out there I’d like to make a really important point. This is something all carers, partners, family and friends should know and practice. Please please please never make a decision for me but rather with me. Don’t not ask me to do something because you think I may be ill. Let me make that decision. I promise you I will say no if I’m not up to it. You deciding for me doesn’t treat me as an adult and does not give me the opportunity to say yes and look forward to something. I know people do it for the best of reasons and think they are helping to protect me. Whenever I find out this has happened I get irritated. When I was first diagnosed and for many years after I didn’t tell anyone I

had cancer. I didn’t want people giving me that “poor you” look. I also definitely didn’t want people to start taking responsibility for decisions I should be making. I’ve been an independent wotsit since I left home at 15. Cancer will not stop that independent streak in me. I hope all that makes sense and you can see where I am coming from.

One of the things I love is the thought that some of the best days of my life haven’t happened yet. I can’t wait and am really looking forward to some new experiences. Wanna share in the fun? Xx