My first week home after R1 of Lemtrada. I can honestly say i have never felt so fatigued with waves of sickness like this before. I also have a real taste of metal in my mouth so I can recommend mint imperials for this!!
It is nice to be home and sleeping in your own bed but it is hard as now I am home the kids just think Dad is better and why is he tired and not able to play. This is the bit that really affects me mentally and it is the part of me that I admit I still cannot accept what MS has taken away from me!!
The Rash continues to come up and as long as you take the Piriton tablets you are given on leaving hospital and the cream then it is not that bad. Just like a bad nettle sting.
This has been a very harsh week and I feel that its only now that the Steroids are wearing off as I am getting more tired.
I am also suffering from terrible joint pains in my shoulders and especially in my left ankle, although I am not sure about my right ankle as I cannot feel my right leg / foot and right hand.
I presume that I will hit a wall over the next week but I am hoping that like other people who have been on the treatment that in a couple of weeks I will be getting my energy levels back up and be able to slowly start to return to some of the things I was able to do before.
I will keep you all posted next week.
Have a Great Weekend