Monday afternoons

Well after my amazingly amazing blog this morning I wasn’t going to blog again today, but after the afternoon I have had I want to, whilst it is fresh in my mind, or I will forget all these crazy emotions.

Yes I am afraid this post will be a downer. Who doesn’t like a bit of drama? Me that’s who.

Those of you who read my blog, you will know I have MS, those who don’t, well now you do, but more importantly, where have you been?! Anyway, this afternoon my MS nurse Jane came over. She is my new MS nurse as I live in a werid place across to county borders, so my care is shared between both, mostly at Gloucester Royal, but she is easier for me to see as she is based in my town and can come to my house. We did the whole talk as she didnt know too much about me as they don’t share alot of info across the border! I am used to talking about it all so it was not an issue for me. We talked about all my symptoms, things I didnt even think of, for example my bladder, it is not the greatest and as of late my bowls have been slow, she informed me it was very likely both of these things were related to my MS and my brain giving muddled signals. Whilst mid conversation I forgot what I was going to say, she said that was also a massive symptom. Although I knew all this I has never put two and two together. Anyone with MS will know the worst and hardest symptom to deal with, fatigue, with it only starting to rear its head again today I feel horrid. It was only last night I was saying to Cal how I had much more energy, I think I jinxed myself. Jane told me I looked exhausted and she really had not expected me to look and seem so tired. 

We discussed everything and I mean everything. It was almost like a counselling session, which was good as she understands. I kept crying which I hadn’t done for a while. I explained the more I seem to fight the worse it gets, she said it was common and I was to try and not fight so much, but at the same time not let it take hold. She suggested the middle ground of managing it the best I can. This is easier said than done. I know a few people see me as lazy, but if they spent a day in my shoes they would see that is not the case, I literally cannot physically go on. Jane suggested I start to take naps, which is possible but just another way I am having to adapt. 

She had been talking with my new neurologist, Mr Warner. He has said I will be starting treatment come September, its just finding the right one. Jane talked briefly about how they work and a few different examples, she mentioned a monthly one which would be given as a day case through IV once a month. I hope this one is not the one I will need. I see enough of the hospital, I don’t need more reasons to go.

She also said how some people need MRI’s once a year sometimes more, this pisses me off as I hate them. I was also informed that if they see no new brain activity on the scan I will have to wait until I have another attack. This frightens me now I know how they feel, although I do not know when they are going to hit me.

All of the info just re-enforced how random and unpredictable MS can be. No-one knows what is next, or when something will next happen. I hate this. It makes me want to run away and hide.

As much as I was glad to talk to her, all this new and old information made me remember I have a neurological condition, the steroids have given me a rest, so to speak but now its coming back at me like a massive bus with bus rage! 

Who knows what tomorrow will bring. No-one and this sucks.  

Today I feel like death!

Well here I am, day two since steroids finished and I feel like death. I was so impressed with how well I was feeling despite being FULL of drugs, but then last night hit and now I am totally feeling it.

Luckily I have had someone with me each day, its still got me thinking. 

I am a mum and I want to do all the things mums do every day! I do not want this week where im either hooked up to a drip or shaking so bad a can barely stand. I want to run around and do daft things and not have to rely on someone else for help. I already have to do this in other parts of my life! 

Therefore I have made the choice to not have anymore steroid treatments for my further attacks/activity. Part of me feels silly for saying it, but I hate the way I am feeling right now, I cant keep going through it all the time. I just wanted some relief from everything, some time to feel normal again. I guess this is what comes with having such an unpredictable ‘condition’ 

For now I will wait for the side effects to finish, until I feel somewhat human again! 

Anyone whos been there, is there I would very much welcome some advice, well off I go to the land of nodd to find some of that missing energy! Night all x