Day 9. Stark reality

This was my last session at 24ft, moving to 33ft on Monday. It was just 3 of us today, definitely the quietest level and expect 33 to be a lot busier. There was a lady there who I had met on Monday who had serious problems walking, but my focus turned more to the gentleman in the wheelchair. He had real problems with his hands and speech as well as his legs. I adjusted his mask for him and helped him take it off along with headphones someone had helped him on with at the start. My main reason for not trying something like this earlier was not wanting to see what I consider a glimpse at what the future “may” hold for me. I was sitting in the tank for over an hour with all sorts of thoughts entering my head about what life would be like me if I end up on a similar path. Could feel my eyes welling up as my thoughts were consumed by all these negative things. I’m sitting here now typing ihinking what a selfish SOB I am but I cannot help it. Tried over many years to change my thinking but I cannot seem to shake these thoughts. I do hope the man is not in too much pain and is able to enjoy a degree of quality of life as my time spent with him today was only a small glimpse at how this illness affects him.

Not feeling that boost today I felt yesterday but think there many factors that might be blocking that for me today. My worry now is that as 33ft is the highest level, it may have many users whose MS is much further progressed than those I have met so far but I’m trying my best not to make assumptions about what Monday will be like. Not making assumptions is something I’m not very good at unfortunately.

I’m still very focused on making it through the week next week and finishing the journey I started a fortnight ago. Hoping that nothing will shake me from this mission. Onwards and upwards.

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Fendercali

I was diagnosed with Relapsing/Remitting MS in 2004 when I was 20. I originally started this page document my progress using Oxygen Therapy but now the new PIP has started to replace DLA and I, like so many others, have been told i am no longer eligible to receive a Motability Car and so I am fighting against the DWP to explain exactly why they are wrong.

2 thoughts on “Day 9. Stark reality”

  1. Q&A session from a health site dealing with the chances of ending up in a wheelchair,might sound strange coming from a person who has gone through severe depression but you cannot think the worst because like every disease there are many variations on the severity of your condition,
    One thing that certainly doesn’t help is at 30 imagining that you are going to end up in a wheelchair,
    That brings on negativity which stresses you out and cannot help.

    Spend some time on the net looking at other case studies where the quality of life is far better than what
    you are fearing.
    Depression could have put me in an institution but I fought it,will never be free of it but doing my level best to control it with the help of family and friends.
    You can’t cure MS but it makes sense that if you give it your best shot your chances of a decent quality of life must be that much better.
    You owe it to give it that shot for those around you but more than that for yourself.
    Once this oxygen is over assess if it has done you any good,if it’s not for you keep looking at other options that come up. and give them a try..

    Onwards and upwards as you say but don’t make them just words, back them up with actions

    Saying all that I am proud of you giving this a chance ,never forget that Son

    —————————————————————————————————————————————-

    Am I going to end up in a wheelchair?

    The natural course of MS is highly variable, and it is impossible to predict the nature, severity or timing of progression in a given patient. Some people with MS will have a more progressive disease course than others.

    In some cases, the course of MS over the first five years may provide a clue to the progression of the disease over the next 10 years. Recent studies indicate that 90% of patients with minimal disability five years after onset were still ambulatory at 15 years. It is estimated that at 20 years after diagnosis, about 1/3 of people who receive no treatment may require a wheelchair or other assistive device.

    With the present immunomodulatory therapies, the goal is to slow the progression of disability. Some people with MS respond quite well and may have no progression over years. For others, the treatment may slow, but not stop the progression. It is important to be proactive and work with your healthcare provider in order to obtain the most appropriate treatment, thus obtaining the highest level of benefit.

    Liked by 1 person

  2. I had to stop looking online a while ago too many percentages on the chances of it become secondary progressive which by the sounds would make the relapsing remitting seem like a trip to disneyland!

    I do try and remain positive but as you know dad I’m crap at it. You were able to pull through to the other side and I do hope i can mirror how you coped and moved on from things. We are all proud of you for being able to do that!

    I have said that at the end of the week I will see which level appears to suit me best and from that I will go back and try it once or twice a week for a while just to top it up. World keeps on spinning and just gotta “run” fast enough to keep up with it.

    Like

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