Saturday, 1st day home – I woke with a really sore head. Drank a glass of water but it just would not shift. I ended up getting up and drinking more water along with the new meds I have to take along with a couple of paracetamol. I then went back to bed to lie down in the dark. I fell asleep again and woke up feeling much better.
The day passed slowly, I cant believe the boredom that I felt while not being fit enough to actually get up and do much. By around 9/10pm my eyesight was getting worse again and the glasses that I have weren’t helping much.
Sunday – I had an extremely broken sleep, but surprisingly I didn’t notice much when I got up in the morning. I once again had a sore head which I tried to nurse with drinking more water. In the gift box that my brother brought to the hospital he had included the Head Soothe roll on for sore heads. I’m not sure why I hadn’t tried it before. But it worked, it actually soothed my sore head straight away. I would highly recommend it.
I’ve struggled today. I want to do more that I am actually fit to do. My garden needs work done in it so my partner has been out shredding some of the garden waste. I decided to help. I don’t know what I wanted to do as I was scared to touch the garden waste in case anything bit me with my lowered immune system. I decided to pick a few things up off the ground and put it in the bin. Not as easy as it sounds, my balance isn’t so good and the effort of bending up and down was very difficult. I quickly gave up before I fell over. I stood and watched instead.
Before attempting the garden I decided to clean out the car. Again not really fit to do this just now. Thankfully I had help, and I really didn’t do much. I just picked up some rubbish off the floor. I then started picking rubbish that the kids had left out of the boot. Soon I was sitting in the boot, simply knackered hardly able to move and feeling like I had ran a few miles.
You would have thought I would have learned my lesson by now. But then I had an attempt at hanging up the washing. I have never felt the washing basket feeling so heavy. And I felt the same with each piece of clothing that I hung up.
What I have suddenly noticed is that the hunger is back. We had a large portion for dinner and then I was hungry again a few hours later.
Monday – Now on reflection I realised that my eyesight wasn’t effected last night. But then I also couldn’t sleep. I was up past 1.30am lying in bed awake and unable to get to sleep. Not thinking about anything, just not tired.
I took it fairly easy in the morning, just a walk to school with the kids. This was tiring but I think more because I was having a “fight” with my eldest to get him to school. But again I’m hungry. I feel like my youngest and had two breakfasts.
I then needed to go into town with my Mum to return some things. Now that was a very hard walk. I felt shattered and I have walked much further at other times and not felt so tired. I was glad to get back to the car and then home to rest. I’ve tried to keep myself active via short bursts of activity to hep me sleep tonight. But unfortunately the sore head returned just before bed, not as severe as before. But still there.
I have noticed that since I got home I am taking some sort of hot flushes. The heat starts just under my chin and rises to the top of my cheeks. It is more uncomfortable than sore.
Tuesday – I woke feeling okay, almost normal. But I can feel the headache starting, the kids aren’t awake yet. The clocks changing must have confused them. I’ll just lie in bed then until I feel better and everyone wakes up.
The walk to school this morning was tiring and almost frustrating. Often on the way back I run for the lights so I don’t need to wait for them to change again. Well I did this today, just a short run on the way back. For the first time I had to stop at the other side of the road to rest. This doesn’t seem like much, but less than 2 weeks ago (10 days ago to be exact) I ran my best time on the treadmill for a 5km. There have been a few times over the past week that I have wondered I this is all really worth it.
It was parents night, which went well. Felt tired when I got home though as we had a late appointment at 7pm.
I tried to take it easier today as I knew that the next couple of days would be busy. I tidied the house and took it easy.
I decided that I should try and drive a short distance and get back to normality. I drove the shorted distance. To school and back (I can walk this each way with kids in 10 minutes). Everything was great until I got back out the car at the house. I felt awful and so dizzy.
So I called my friend to help take my eldest to taekwando class. Back to resting it seems.
Woke this morning a littke sore. When.this happens it often reminds me that I forgot to take my tablets the night before. Not normally a problem. But it means that I have also forgotten to take the anti viral that Ive to take twice a day following treatment.I feel back to normal today. Walked boys to school and then back to school a couple of hours later to see the Easter bonnet parade.
My youngest and I then carried on as normal and went shopping, back for lunch and then back out to a different shop. Had to rest a little inbetween as short dizzy spells came and went.
While out shopping one of the MS nurses phoned me back. She has advised that the vitamins that I was taking before are safe to take, I’d like to retest my levels of b12 and D, she has said that either the GP or the MS clinic can do this. General chat about how I was after the treatment and she reminded me to avoid busy places. This could be interesting over the easter holidays with kids.
For the past 2 nights ive woken around 3 or 4am like its the morning and im ready to get up. I manage to get back to sleep. But wonder I’d its the steroids. I feel back to normal today apart from the steroid flushes. Even stayed up late. Small victories, but maybe lemtrada isn’t so bad. Just hope it is doing what it is supposed to be doing and resetting my immune system.
I can’t believe that is a week since my treatment finished. I can’t believe that another 1 or 2 people have probably just finished their treatment now as well.
I hope that anyone who reads this who is due to start lemtrada will be reassured that 1 week after finishing treatment things aren’t too bad.