Oops think I jinxed it :-(
Oh dear God the last few days have been rather a challenge that’s for sure. I’ve hardly been able to get my head off my pillow. I think I may have jinxed it by daring to think that things were getting better.What’s so frustrating is I can’t even identify the cause as I have been so careful. It’s not like I’m doing a lot – my days are extremely dull!
Feeling so awful it was quite annoying to get a letter from the Job Centre with a mandatory two week programme to go to next week (great notice!). Basically you’re not long term sick anymore you just lack the motivation and skills to get a job so they give you a helping hand or else they stop your benefits (which are bugger all and have only just started incidentally!). I called up to say I was too sick to attend but after talking to about 29 people who repeatedly told me that their system said I was well enough (that must be one hell of a smart computer system!) and that I had no choice it was starting to get annoying.
It was so frustrating explaining that I’m on this ‘course’ because I’m sick so how can it be that shocking to them that I’m too sick to attend? I eventually got through to someone who had a brain and she saw from my notes (nobody else had bothered to actually look!) that I had some ‘slight mobility problems’ (that’s one way of describing being confined to bed for four days!) and visual difficulties. She realised it was all a bit crackers in the end and said I could do a phone interview instead.
The phone interview was pretty amusing as I was laying in bed at the time unable to get up. ‘So on a scale of 1 to 10 what is your motivation to look for a job?’ – hmmmmm about zero because I can’t actually imagine working as I can’t get off my bed and what’s the point when I have one already waiting for me? It all got rather silly especially when she was trying to work out what skills I would be required to learn to make me more employable when you have all the qualifications I have.
So things have been pretty awful made worse by (when I could actually manage to get out of bed) putting my bright red shorts in with my washing and turning my clothes pink. I’m strawberry blonde I can’t do pink!
That was topped off nicely by wondering why my face cloth keeps looking really grubby all week (I changed it frequently) and realising that the guests we have staying with us have been using it to clean the bath with once they have finished. Nice!
So feeling better today my Auntie took me for a trip out to Primark (don’t judge me I have no money and I don’t do pink!) for some shopping and then out for lunch in a beautiful setting with a nice view of the A41 something – I don’t know why this view doesn’t feature in more postcards of the local area? Good steak sarnie though 😉
Oh and just in case anyone from the Job Centre stumbles across this site and gets excited about me going out for the morning – dont worry I’m paying for it now and I don’t know how long for but trust me, I want to be out of bed much much more than you want me out of bed!
My god those phone calls must be so flipping annoying!!! I hate idiots on the end of a phone who just don’t seem to have two brain cells to rub together. Bloody useless!!! So sorry you are feeling bad, will keep my fingers crossed…
Hi Sues,
I stumbled across your blog from the MAV website and have been enjoying ready about your battle with this terrile illness.
I have just been diagnosed with it by a neurologist after 7 months of being unsure. I am not as bad as you, luckily I can still function as I have a child at school I get to rest up during the day. I’ve started some new meds and the difference is remarkable! So far….
Having to explain this to people is awful isn’t it. Most think its like a migraine and will go away after a few hours, not for days or weeks or months. I’m lucky to have a very supportive husband and family as it sounds like you do with your family.
Anyway, just wanted to comment as I’ve been ‘stalking’ your blog for awhile now!! lol
I too have started one, although I haven’t revealed what my illness is on it. Its agluttonouswife.blogspot.com.au if you want to have a read one day.
Really hope you find some relief soon as being in bed day after day is soul destroying.
Sending you healthy good vibes and a good laugh
Cheers
Jan
Hi Jan
Thanks so much for getting in touch and your well wishes! I’m so sorry you have been diagnosed with this horrible illness too. I’m glad you have a supportive family it makes all the difference. I know, trying to explain to people is so hard most people just look at me as if I’m just mad. It sounds horrible but I’d really like some people to experience our symptoms for a day and see how they cope! Out of interest what medication are you on that’s working? I don’t think anything had made much difference with me so far.
Right, I’ll check out your blog now.
You take care,
Sues
Hi Sues, sorry to hear you’re having a crap time again – can’t believe how bloomin crap the job centre are!! You could do without that!! Fingers crossed after some rest you’ll be up and about again soon xx
Hi Emma
Yes the Job Centre isn’t exactly my favourite place I have to admit! Cheers for your well wishes how are you doing?
Hey Sues,
Sorry I just re-read what I wrote and I hope you understood that I wasn’t enjoying you being sick, just thrilled to read about someone else with this illness, I’m sure you know my intentions!! 🙂
I’m on sandimigrane 1.5mg and endep 30mg(amitriptoline). I’m going to wean myself off the sandimigrane as it wasn’t really working, I was initially on 6 tablets a day with no real change but now as I’ve added the endep with such great results my neurologist put it down. Only negative is I’ve gained a few kilos which is a bummer but being ‘well’ is worth it. Before the endep I tried everything natural, no coffee, no wine (my saviour!!), gluten free, vitamin supplements all to no avail. I’m now having coffee, wine anything really but trying to be as healthy as possible. I had tried topomax with terrible side effects after only 3 days so gave that the big boot!!
My blog has really helped me do something positive with my time as I’m hardly working. Taking it all a day at a time.
Thanks for the reply, you have my email if you ever want to private message me 🙂 Its such an isolating illness and leaves you second guessing yourself all the time. I kept thinking maybe it was all in my head, but it is real. What was the trigger for yours? Mine was mainly stress.
You will come through this I’m certain. I really hope your next post is from a ‘well’ you.
Take care,
Jan
Hiya Jan, no worries I didn’t take it that way I’m not that sensitive 😉 I’ll email your account so I don’t bore everyone to death With all my medical problems I’ve had on these fun medications! I don’t know what I’d do without wine either 🙂
Oh and your blog is great by the way it made me very hungry but did inspire me to do some more cooking!
Hi Sues
I love your blog! I too have MAV and was diagnosed last year but have had it 4.5 years now! I am now under Dr Surenthiran and on two meds but not sure how much they are working. I can so relate to all your posts and how bad this illness is. I wondered what meds you are on? Would love to hear from you…
Jemma x
Hiya Jemma, my goodness that’s such a long time that must have been terrible to only be diagnosed so recently. Are you feeling any better now? I’m taking 200mg pregabalin three times a day. It’s taken me ages to get to that dose and to be honest I’m not sure if its making any difference. I’m really tired at the moment and I’m not sure if its the drugs or the illness, it’s so difficult isn’t it? What medications are you taking? I’m due to start another one but I’m putting that off for now. Well I hope you’re having a good day with symptoms behaving themselves.
You take care,
Sues
Hi Sues
Great to hear from you. I am taking 35mg Nortriptyline which I think has helped and has certainly helped my neck pain. Also Dr S recently added Gabapentin which I am only taking 100mg per day. I am meant to go up to 3 times a day but it makes me so tired I seem to only tolerate it at night so I can sleep it off. Yes the first year was hell. Then I gave up my job and took it easy and recovered a fair bit by doing very little only to relapse massively last summer and then I realised it wasn’t Vestibular Neuritis but MAV. I live in the northwest so it was a long drive to see Dr Surenthiran but glad I did. I hear he puts a lot of people on Pregabalin. Do you go on the mvertigo forum? It would be great to chat to you on there? Hope you feel okay today x
Hiya Jemma I hope you’re not too tired today? I guess you just have to take it really slowly with the Gabapentin and just see how you go. I’ve been really up and down the last few days which is so frustrating!
I used to go on the forum a lot about a year ago and then I got really sick and was just (unfairly) getting annoyed with what people were complaining about when things with me was so awful. I realise now I’m not the only one going through this and I should probably get back into it to get some support and potentially help others. It is a very good site! Maybe see you on there soon 🙂 I hope you have had a good weekend!
Hi Sues
I have been so tired today. Like you say it is up and down for no real reason. One minute you can be okish and the next awful. I know what you mean about forums. I think it is normal to feel frustrated especially when other people all seem to be improving on their meds etc and you feel that you aren’t. Or just by some of the things they say which can irritate you. I always seem to make friends on forums then they get better and disappear or they decide to not carry on posting anymore and then I get really down about things. I guess I am too hard on myself sometimes. I sometimes wonder if the migraine brain is just too sensitive about everything!!
Hope you are having a decent weekend and your symptoms aren’t too bad at the moment x
Oh my goodness talk about sensitive, I feel like I’m an emotional wreck most of the time. Lets blame the migraine brain or the meds! I’m sorry that you have lost contact with those that have got better on the forum that must be really gutting. I guess it’s not that you begrudge them getting better its just so hard when you keep waiting for it to happen to you. Lets look at it this way, when we get better we will have such exciting lives we too will forget about the forums!
I was diagnosed with MAV about two and a half years ago. It seems to be just a case of trying each drug and hoping one will fit. I’ve been on pregabalin about 18 months now. I’m in that predicament that I’m not really sure it’s doing anything but I don’t want to come off it just in case I feel even worse. It takes such a long time to get to a therapeutic dose.
Well, I hope that you are less tired today. I think we are due a good week 😉
Take care,
Sues xx
Oh yes just wanted to ask Sues, how long ago were you diagnosed with MAV? And how long have you been on the Pregabalin for now? x
You have done well sticking in there for so long on the Pregabalin. Perhaps Dr S will add another med for you to try as he seems to like doing that. I hope you’re right about the forums! It’s hard to imagine being free of this isn’t it!
Email me anytime you like x
Hiya Jemma. Dr S wants to start me on flunarizine soon but I’m having a little break as I feel I’m all over the place and I just need to let things settle for a bit. It sounds crazy but every drug I have taken so far has made me so ill I just need a little break otherwise I think I will lose my mind! It is very hard to imagine getting better but we have to keep picturing it otherwise its just too depressing. Do you manage to do much? I find swimming and yoga help me as long as things are stable. I hope your symptoms are behaving them selves today!
Take care xx
Worth noting that some of those idiots on the phone are suffering the same. I do that job (when I’m not bedbound by my mav) and it’s a real struggle to get through the day, they don’t make up the rules & are just doing their jobs
I’m so sorry, I was just very frustrated and upset about the system. I shouldn’t have made fun of the people working there as you are right, I have no idea what they are going through in their own lives. Really hope that you are managing the MAV – vertigo is not fun 🙂