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Mustn't Lose Sight of The Bigger Picture

I was diagnosed with R.R M.S at the end of July, but my troubles started in 2012. I am now due to start Lemtrada infusions in January Everything has been beyond slow moving regarding treatment. I’m getting worse all the time, falling up the stairs and all sorts Whilst I have heard good things about Lemtrada at this moment in time I can’t seem to get past how it’s going to administered, that I have to stay in hospital for it. Looks like too that I won’t even get to wear my own clothes whilst I am in hospital. I hate change and this is doing nothing to quell my issues with that I never been in hospital for anything, but in the last few months I never had so many blood tests, MRI’s, cannulas all sorts. Doesn’t really help that I am not at all on board with having needles in my veins. I also haven’t got the greatest faith in the hospital workers cos I’ve had them laugh at me and all sorts. Is that real funny to them then? My illness? I want good results from this cos I am sick and tired of not being able to perform the most basic of tasks. Will I ever be able to walk without a stick? I don’t know I am strong and I must not forget that, but I feel I have been worn down somewhat and need to regain my strength again. I also don’t want to set my expectations too high. But I tell you, if I go through all that and the results are sub standard I will be massively irritated, not impressed. I just want my life back

Oh dear. I am sorry you feel so low.

How dare they laugh at you at the hospital. That is not good.

I really hope that the infusions help you.

Take care and (((hugs))).

Shazzie xx

I look at it this way… having MS offers you a challenge.

The extent of this challenge is highly variable and unpredictable. No one, absolutely no one, not even other MS sufferers can tell you what you are going through. And even fewer have any kind of entitlement to derive humour or pleasure from your circumstances.

Focusing on the bigger picture is dead right. Bang on! You have a range of options available to you. I would question why you have settled on a treatment that you are not happy with, but i am sure you are not walking blindly into this situation and your choice is your choice.

The vitally important thing is, that you are doing something. And the fact that the ‘something’ goes beyond your zone of comfort, is full of change and inconvenience is only a testament to you and the character you have. So be proud of yourself and know that whatever you endure today will be closer to being over with tomorrow.

You have to indulge optimism, even in the form of out right denial sometimes. Everything else is noise.

Good luck and ‘enjoy’ the experience. If nothing else, you will learn something new about yourself and that is never a bad thing.

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Sounds as though you would like to not have MS. Wouldn’t we all?

I didn’t choose MS and neither did you, but it chose us and we’re stuck with it.

But we can choose to get on a really effective DMD and start the fight-back. None of this is pretty and none of it is what you wanted (me neither) but there it is. Keep the focus on the big picture, as you say. Getting on Lemtrada means that you will be doing all you can to stay as well as you can. I hope that it stops your MS in its tracks.

Good luck.

Alison

Hello

It concerns me, when you say hospital workers have laughed at you. This should not happen and you shouldn’t tolerate it.

Do you have anyone who can act as you advocate? Failing that, you can contact PALS (Patient Advice and Liaison Service) and speak to them about your past hospital admissions.

Good luck with everything.

xx

Thank you all for your words, they are very helpful. I am feeling somewhat better now, I have resolve. I will not fall to this. I can’t. Regarding the treatment I just go with what the neuro said to me, He reckons that’s what I need. That he’s going to push me to the top of the list. It’s just all such an alien notion to me. But I must not forget, I have lived on my own for 11 years, I was 16 when I moved out. I worked in a job I absolutely detested for 5 years (which I have now been released and payed off from, which is excellent news). I suppose I wouldn’t have been able to do those things if I had minimal strength. My friend also talked some sense to me which helped me realise/remember what I have achieved over the years. And regarding the laughing; it was when I first developed an inflamed optic nerve and the nursey thought it was funny when I couldn’t read the eye test chart cos, oh, I had no vision in my right eye. Whilst I do feel uncomfortable with the impending treatment I more so want so badly to feel better, more in control of my legs so I will do that if that what it takes. I have seen that some say it can stop M.S in its tracks and I really hope that is true. I however do not want to set myself up for a fall (ha) but that is true, a little optimism can’t hurt. Thank you all again, I was feeling very down when I typed that, but as I say, I have resolve. There is much to look forward to. Maybe I’ll be skipping round Amsterdam in a few months. Maybe!

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You have such a lot on your plate at the moment: a very recent MS dx, with all the emotional trauma that goes with it, and now having to get your head around the proposed treatment. You really have had very little time to process all this within yourself, and it is no wonder if it all feels alien and strange and, perhaps, like a bad dream from which you still hope to wake up.

Please be patient with yourself. There is every reason to hope that you will feel calmer and more in control as time moves on. The first few months after dx are very difficult for most people, and that is just something that needs to be got through. I hope that you reach calmer waters soon.

Alison

I’m having L Emtrada as an outpatient. Spent 8hrs on the ward and couldn’t fault them. It will be less for future days.

the tier 3 trials were done like this and I am so glad to be in my own bed: have a chat to your consultant and may be he can speak to Cardiff or Addenbrooks for advice, as if you are anxious it may help. I ended up having to be an outpatient as there are over 70 beds short everyday (thanks George Osborne for assisting in the final collapse of the wonderful NHS) and I was having to be on hourly standby for weeka to get in as a Neuro inpatient

Hope things get sorted soonfor you - I’ve also been DmD free at the mercy of it all, as my consultant says it feels good to kick it one, finally x