One Month Later
I've not really felt like keeping this blog up because of the fear of being depressing. I don't want to sound depressing but it's the only way I can explain what's been going on.
It's been a little over a month since receiving the first lot of treatment and I'm still waiting to see the positives as I feel worse now than I did prior.
Fatigue is the biggest issue for me which I didn't fully experience prior to the treatment. I used to think that fatigue just meant that you were really tired, oh how I was wrong. Fatigue for me is like my whole body, especially my legs just don't want to work. I struggle to get up, let alone walk. When I'm up to going out I tend to use Olivia's pram as a walking aid which helps and doesn't mean I need to use a zimmer, imagine that! I will forget what I'm talking about half way through a sentence or forget the simplest of words 🤷 I sleep A LOT and will wake up after a full nights sleep feeling as though I haven't slept for a week. Since receiving the treatment I've only woken up feeling refreshed once.
I haven't had a full day on my own with Olivia yet. When Kyle is at work I have a helping hand from friends and family which takes the pressure off a bit.
I was hoping that the medication and antibiotics I continued to take after the treatment was having an effect on me and that once I'd stopped taking them then I'd start to feel normal again which unfortunately for me hasn't been the case.
Before having the treatment I had read about a lady who had finished her treatment on the Friday and was back to work on the Thursday, just 6 days later. I thought that this would be me.
Anyway, the good bits. I'm tested for blood, kidney and thyroid disorders monthly now for the next 5 years. Although it's a pain having to go to the GPs, pee in a pot and get stabbed, I do appreciate that I'm being monitored and cared for closely. I've had my first lot and have been given the thumbs up by my MS nurse, Miranda.
I also spoke to Miranda about everything that's been going on and I've been reassured that this is all normal and I'm actually one of the best patients she's seen! She's told me that my body has taken "one hell of a battering", not to beat myself up over it and I will go back to what's normal for me.
I now have a blue badge! I don't know who is happier about this, me or my husband?! I'm happy that it's an aid to my condition whereas Kyle is happy that we get all the best spaces with loads of room! 😂
One thing I didn't know though is that a relapse is new symptoms of MS. I thought it was any symptom. The treatment that I'm having will reduce the risk of me having new symptoms of MS, not reduce the risk of the old symptoms coming back. I'm happy knowing that there's a 70% chance that I'm not going to get any worse and potentially end up in a wheelchair though, I think that's my worst fear.
I'm now starting to see more good days than bad and I'm doing things that I couldn't have done 4 weeks ago so I can definitely see progress. I have an 11 month old who needs her socks putting on 77 times a day after she's pulled them off so I need to get back to my normal self.
Sorry if this has been a bit of a depressing read but I've had over 1000 views of this blog and received messages from strangers asking how I'm getting on so felt as though I should post this 😊
It's been a little over a month since receiving the first lot of treatment and I'm still waiting to see the positives as I feel worse now than I did prior.
Fatigue is the biggest issue for me which I didn't fully experience prior to the treatment. I used to think that fatigue just meant that you were really tired, oh how I was wrong. Fatigue for me is like my whole body, especially my legs just don't want to work. I struggle to get up, let alone walk. When I'm up to going out I tend to use Olivia's pram as a walking aid which helps and doesn't mean I need to use a zimmer, imagine that! I will forget what I'm talking about half way through a sentence or forget the simplest of words 🤷 I sleep A LOT and will wake up after a full nights sleep feeling as though I haven't slept for a week. Since receiving the treatment I've only woken up feeling refreshed once.
I haven't had a full day on my own with Olivia yet. When Kyle is at work I have a helping hand from friends and family which takes the pressure off a bit.
I was hoping that the medication and antibiotics I continued to take after the treatment was having an effect on me and that once I'd stopped taking them then I'd start to feel normal again which unfortunately for me hasn't been the case.
Before having the treatment I had read about a lady who had finished her treatment on the Friday and was back to work on the Thursday, just 6 days later. I thought that this would be me.
Anyway, the good bits. I'm tested for blood, kidney and thyroid disorders monthly now for the next 5 years. Although it's a pain having to go to the GPs, pee in a pot and get stabbed, I do appreciate that I'm being monitored and cared for closely. I've had my first lot and have been given the thumbs up by my MS nurse, Miranda.
I also spoke to Miranda about everything that's been going on and I've been reassured that this is all normal and I'm actually one of the best patients she's seen! She's told me that my body has taken "one hell of a battering", not to beat myself up over it and I will go back to what's normal for me.
I now have a blue badge! I don't know who is happier about this, me or my husband?! I'm happy that it's an aid to my condition whereas Kyle is happy that we get all the best spaces with loads of room! 😂
One thing I didn't know though is that a relapse is new symptoms of MS. I thought it was any symptom. The treatment that I'm having will reduce the risk of me having new symptoms of MS, not reduce the risk of the old symptoms coming back. I'm happy knowing that there's a 70% chance that I'm not going to get any worse and potentially end up in a wheelchair though, I think that's my worst fear.
I'm now starting to see more good days than bad and I'm doing things that I couldn't have done 4 weeks ago so I can definitely see progress. I have an 11 month old who needs her socks putting on 77 times a day after she's pulled them off so I need to get back to my normal self.
Sorry if this has been a bit of a depressing read but I've had over 1000 views of this blog and received messages from strangers asking how I'm getting on so felt as though I should post this 😊
You are amazing Amy you never show you are suffering and please ring me if I can help anytime..love you..xxx
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