Last reply 4 years ago
Relapse Rant !!!

I’m not so upset about my relapse more so about the care I have been given.
I start to get dizzy on Thursday evening, this is not unusual for me i would have had wee dizzy spells before i was diagnosed, but when i woke up Friday morning I had double vision. I called my MS nurse who wasn’t in, then on lunch then the hotline stopped working at 12pm. So I called another nurse for some advice, she said as I wasn’t ”hers” she couldn’t talk to me. I called my Mum in floods of tears, I can’t see straight, stand or walk with looking like I’ve had half a bottle of vodka, she suggests I call my GP, so once i get an appointment there I head. I was given some drugs for vertigo to stop my from feeling sick and told to call my Neuro when i get the chance. This is not what I’m pissed about.

I woke up Saturday even worse and as our local A&E closes weekends and evenings as does the MS hotline I had to call out of hours, I went down and was told I had to head into the city, a half hour drive, to get bloods before I could be given steroids, as they didn’t have a lab. I very luckily had a friend lift me there with my head between my knees the whole way. I got to their A&E waited a few hours and got some blood taken then the usual tests done then sent on my merry way after 7 hours without any drugs just the advice to call my Neuro when I can. I’m not pissed about this either.

Sunday I just got on with it, making a make shift eye patch to help the double vision, and lay down most of the day with my eyes shut.

Today im pissed. I have literally made 20 plus calls, I called the MS nurse a number of times with no answer, then called my Neuro’s receptionist who put me through to the same hot line that wasn;’t being answered, then she put me through to another hospital to find my Neuro, who is on holiday, then I called my GP who after the 5th call answered and was told to call my MS nurse so i tried again, I then called another nurse in a different district for some advice she said all she could do is email my MS nurse for me and to wait for a call. I tried a few more times and have given up. My Mum who lives in Scotland ( I’m in N.ireland) has called the local MS people there for advice there in the vain hope of some sort of information.

I totally understand people take leave or are ill at times or just have the day off, but I can’t help but feel hard done by the first time I have ever needed this service there is no one to help me.
It’s not just my vision and my balance, it’s my work ( I’m a self employed hairdresser) my home life and my vanity. Even if I’m just told to go to bed and relax and forget about steroids I will, I just want a reassuring voice to tell me what to do.

I’m so f**kin’ frustrated!!!

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4 years ago

It’s frustrating when you know what help you can get and its not available. I had vertigo before so I know how your feeling and my best advice is to lay flat as you shouldn’t feel so bad. Keep trying to get hold of your MS nurse in the mean time but steroids won’t be a miracle cure, they only speed up recovery. Weekends are the worst time for a relapse to start because help is limited by availability.

Take it easy and rest whilst it takes course and hopefully your MS nurse will get to you shortly.

4 years ago

@Lady.Caroline , your rant is perfectly understandable. It seems to be indicative of our Health Services at this time. Too many headless chickens running around in ever-decreasing circles.

But, your tale really is the limit and has left you feeling that you are unsupported.

Do keep your GP advised of all this as he is your Primary Care Provider. They need to know that there seems to be no support structure for you.

You could also try calling your local MS Society contact :-

In the meantime, all you can do is treat yourself kindly and pamper yourself a bit. Getting further stressed about it won’t help you….

4 years ago

I’ve been posting on shift for a few years now and I can’t remember hearing of such dreadful treatment as you describe. You’ve done well to keep your sanity. You’re right – what’s been lacking above all is a voice of reassurance that you can trust. I’ve never heard of an A & E being closed at weekends – the thinking is presumably that people only have emergencies five days a week….. Unbelievable. There clearly needs to be a big complaint made about the situation, but why should it fall on you to create? You’re not well! You need looking after!! I think all you can do is remember the logic as posted here by others: there isn’t a magic bullet to stop the double vision and even steroids take time to work, so actually what the medicos would likely be saying is: rest up. Most healing will come from de-stressing and allowing the body to recover. Any chance you could get a massage or a relaxing facial? Failing that, warmth, cushions, nice music/TV, any pampering treat you can give yourself. Try to lose the anger. Big, big hugs. xx Kay

4 years ago

Thanks for your support and kind words. I finally got hold my of my GP on Wednesday and was given a course of steroids, he gave me an appointment for this morning and a very kind friend took me.
I have already had some improvement to my vision and I’m finding an eyepatch really helps, even if my dept perception if rubbish.

Ive relaxed a great deal too, I’ve had a massive cry and and vented to whoever will listen, i must say even writing it down here helped.
It might sounds silly but i treated myself to new bed linen and a big fluffy duvet and have spent most the week in my bed/ duvet nest with Netflix. 🙂

Once I’m back to 100% I will be writing a strongly worded letter to whom it may concern about my treatment. So many promises were made about how things would go when i had a relapse, none of those where met, I won’t forget the sense of abandonment i felt. Its totally ridiculous that our local A&E closes on the weekend and evenings, the terrible thing is that my case is hardly the worst that would need their service.

But for now all that matters is that things are improving and that i can slowly get back to work and ”normal”.

4 years ago

Glad you’re starting to feel better. 🙂

4 years ago

Glad the week in bed helped. The problem with getting angry at poor treatment is the stress of it makes you ill – which is a no win situation. I live on the border of two countries and am about to loose all the health care in the country where I work. I don’t even know if I will be able to find a neurologist in the country I am being forced to use. I am so worried about it I can’t sleep and there is absolutely no one to help me at all. All the getting angry I have done has just made me ill – so I have given up . I hope you are strong enough to fight your battles.

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