Me, My MS and I

Feeling Dreadful But Trying To Battle On

Day 3 of the Methylpred. and feeling pretty dang crappy. Never taken oral steroids for my MS before, but I’m sure it’s all pretty normal. The tablets taste absolutely foul – 5 all at one go – and I have a horrible bitter and metallic taste in my mouth constantly. Feel generally in poor health in addition to the relapse nonsense. Just 2 more doses to go, woohoo! Keeping an eye out for oral thrush, which my nurse warned me about – fingers crossed I don’t get it! Unfortunately, symptoms haven’t lessened any yet, but perhaps I’m looking for too much too soon. I’d read steroids generally increase appetite, but they’ve killed mine unfortunately.

As far as my symptoms go, walking is still mighty difficult and my legs are very wobbly. Knee buckling has gotten worse with this relapse. The FES has made a difference though, and I’m not worrying so much about my toes catching and falling over. Fatigue is very bad at the moment, and it’s almost impossible to work through – it’s as though a fog comes over me and I can barely think or function. Due to the nature of my work, I can take my time with tasks though and have a notebook I use to help me remember tasks to do. The nerve pain shooting down my right arm and into my fingers is still very painful and intermittent and I’m continuing to run to the loo frequently. Balance is still off and drifting a little as I walk (thinking of getting an ‘I’m not drunk’ badge!). ‘Phantom pain’ as I refer to it, is driving me berserk! My body hurts, rather badly, in areas and it’s frustrating, especially when I can’t take Ibuprofen as I’m on steroids. Cognitive abilities remain reduced, and I’m getting confused rather easily. I managed to say ‘England’ instead of ‘Edinburgh’ and was convinced I’d said Edinburgh! My speech isn’t the best either – having to enunciate my words more in order to speak clearly. For someone with a high IQ, it’s extremely frustrating and a little distressing if I’m honest, but I’ve been referred to the neuropsychologist the first week in December to test my cognitive functions and tackle any areas affected, and finding strategies to help me cope with the changes.

Had a bladder scan last night and the news wasn’t great: my bladder contained 171ml of urine, and after ‘piddling’ (as my nurse calls it) I still had 126ml in my bladder. Anything over 100ml left isn’t terribly good. I’ve to go back next Thursday for another scan in case it’s my relapse making things worse. If I still retain over 100ml after ‘piddling’, I’ll be referred to the continence service and intermittent self catheterisation may be needed. Oh, the joys! I take a cranberry supplement every day and do all I can to look after my bladder as I’m very prone to cystitis and had an awful urinary tract infection last year. Still, I’ll manage whatever my MS throws at me : )

Rather impatient to recommence the LDN once I’ve completed the steroid course, and this might improve my symptoms. And I have the Copaxone to start probably in January sometime too. Looking forward to both.

Finding it a little difficult to keep my spirits up – took me 40 minutes to walk to the bank and back at lunch time today, which usually takes 10 minutes at the most each way. Have to leave the flat earlier in the morning to get to work on time too, although thankfully I don’t have a long walk. Amazed I’m not off sick from work, but I think I’d get down if I was in the flat all day. It’s far from easy – extremely difficult in fact – but I battle on. I generally catch a taxi home as I’m worse by the end of the day. Walking, severe fatigue and cognitive functions are making it difficult, but luckily I have a great boss who’s very understanding, especially with all the time off I’ve had for hospital appointments recently. Not physically capable of taking part in my tai chi class tonight, so didn’t go, which I’m disappointed about, but sometimes one has to recognise when not to push too hard.

Down beat as this post may sound, it’s not all bad; I’m managing to keep my chin up and I’m determined to fight this as much as I can and keep going. It’s extremely difficult, but I do like a challenge! ; )

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  1. * melissa fengler says:

    2 wks ago my G.P sent me to hospital for intravenous methylprednisolone treatment. It was frustrating as i was already feeling rotten from the relapse and then i had to go to the hospital and be put on a drip for 4hrs everyday for 5 days. The treatment made me totally exhausted and i suffered insmnia really bad. The top half of my body went really red and i couldn’t shake the banging headache/face ache i couldn’t chew properly cause it was so painful. After the 5 days i was hardly able to walk for the next 5-6days as i was so fatigued and found myself wondering if it was all really worth it. i developed an infection-nobody told me that the treatment breaks down your immune system. However there is light at the end of the tunnel- Everything seems to be getting better i have the most energy i have had in about a month and most of the symptoms from the relapse have gotten so much better. I just have to finish these antibiodics to get rid of the infection and then everything will be sweet!!!!!!!STAY POSITIVE-things can improve 🙂

    | Reply Posted 7 years, 3 months ago
    • So sorry you had such a hard time with the steroids. Glad to hear you’re getting there now though with the antibiotics. Hope you’re back on top form soon! Positivity definitely rocks! 😀 thanks very much for the comment.

      Take care, J x

      | Reply Posted 7 years, 3 months ago
  2. * Lisa says:

    Oh my.
    I know your mailing was a while ago but boy am i going through the same.
    Im on 10x100mg a day for 3 days and im struggling just 5 hours into them.
    Firstly im gonna check this mail goes through before i leave the rest of my story.
    Lisa 😦 im sad and uncomfortable

    | Reply Posted 5 years, 10 months ago
    • Hi Lisa, many thanks for your comment. Sorry to hear you’re having a tough time at the moment. Hope it improves soon. J x

      | Reply Posted 5 years, 10 months ago

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