It’s no lie when you hear the words “it’s a rollercoaster ride”. I’ve been on this ride for 7 years now, and I knew it would be bumpy, very bumpy some days, but I really have had enough now. I just want to get off the ride for a day or two, and do some normal every day things without feeling utterly exhausted after an hour or so…ahh, the dreams us MS’ers have!.
Anyway, feeling sorry for myself doesn’t get me anywhere, but the past 18 months is slowly taking its toll on me. 18 months since I started self-injecting with Plegridy, and I have been feeling pretty rubbish. A few mild relapses lasting two-three days, and I’ve been plodding along, because that’s what I have to do. As you know from previous posts my white blood count has been low, very low, but nothing to be concerned about.
I received a letter from my MS Nurse last week asking me to book myself in for another blood test in October. I booked it, and gave her a quick call. My last blood test in June shows my white bloods to be low, not surprised, but now my platelets are low, very low! Then we discuss how I’ve been feeling since June. Nothing has changed and I’m honest with her, brutally honest with her. I hate this disease. I work Monday to Friday, and some weekends I don’t even leave the house because I am exhausted. When its injection weekend, well, that’s always a write-off because of the flu-like symptoms. Then Monday comes and I have to get myself together to face another working week. I’ve just had enough. She said it’s no wonder I’ve been feeling so low, fatigued, no energy etc, because of my bloods and the side effects of injecting. We then discussed changing my treatment as Plegridy obviously isn’t working for me. When I said to her, “I thought this was it – I thought this is my life now”, she said no. Just because you have MS, this is no life for you. Then the tears of frustration, anger maybe, came. I needed to let all this out. The great thing about crying on the phone to your MS Nurse, is that they just get it. They know we don’t want sympathy. She quietly talked over my crying and snotty rant, and calmed me down.
So, I was asked to think about changing my treatment to Copaxone, and I’ve decided I will. From injecting once every two weeks, it will now be three times a week. I was freaking out about site reaction marks as mine seem to fade after four weeks, but its all to do with my bloods. Come off Plegridy, fingers crossed my bloods increase, and Copaxone is the treatment for me – hopefully!.
I’m dreaming of duvet free weekends, and enjoying my life even more…
Don’t forget to stop a while for a smell of those roses…they will pass you by.