The month of May has been a very mixed bag. One day I am feeling great, the next I am struggling. But, if truth be told, there have more 'bad' days than good.
There has been a lot happening too and I have, once again, become very aware of my need to slow down.
This is so difficult for me. My personality won't let me sit still, and I hate sitting watching while others do things for me! It is definitely something I need to simply 'get used to' ... however hard I find it.
Additionally, I have also taken the decision to stop my injections for a few weeks, because I have a feeling that the 'fog' I was living under might actually be side effects from Rebif.
If, in six weeks or so, I am still feeling funny then a least I can rule out the side effects theory.
In the meantime, the spasms in my legs have gotten more frequent and increasingly painful. My MS nurse contacted my neurologist and he has recommended Lyrica instead of the Baclofen. I'm only on day five but so far I have seen no improvement. In fact, I have had to start using a stick for walking when I'm out of the house. It's mainly in case my legs buckle beneath me or feel weak.
This has been a big step for me as I have had to admit that I need it. It's one thing buying a stick, but actually taking it out of the house is hard.
It's a physical embodiment of how my body is letting me down. A sticker for all to see that, despite the brave face and positive energy, MS is still taking its toll.
On a lighter note, Charlotte is now 18 months old and turning into a little character ... keeping me on my toes but she also the very reason that I have more smiles than tears.
Note: I should mention that I decided to stop my Rebif treatment after speaking to my MS nurse and neurologist.
I have been using baclofen for 10 yrs and it is wonderful but I had to also take up yoga to help. Very slowly I have had to increase the baclofen but still have room for more.
ReplyDeleteI took Avonex for 8 yrs and stopped because of a low white count. I felt so good when I stopped but let my neuro talked me into trying Copaxone. In 2 yrs I could not get over the severe local reactions so stopped that. Felt much better but let her talk me into trying Avonex again as my white blood cells had gotten much better. Only tried for a couple yrs and have been off all injections for two yrs now.
I forgot to introduce myself. I am Mary Ellen Bragg, age 64 and live in Athens, WV USA. I was diagnosed 2/99. Just found your blog at Trevis' site. You & your daughter look gorgerous. I am Mary Ellen Owen Bragg on facebook.