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Well, for the first time in a VERY long time i had a proper night out! I have been out for a meal once in the evening in the last year with a friend, but it was a very early meal. I have been out for some afternoons but am usually home by 6pm. The last time i can remember being out late is my sister’s wedding: May last year. So this was a big deal!

My partner goes out to concerts sometimes and when buying tickets always asks me if i think i could come. I always say no, as previous attempts have resulted in trauma at the event, or more usually a wasted and expensive ticket. This time i thought maybe it was possible as i was feeling a bit better at the time of booking. Also with the new wheelchair i would hopefully be more comfortable/supported and have less pain during and afterwards. The venue is nice, familiar, small and accessible. Plus we got one ticket free as a disabled person plus carer so there was less pressure. All good.

The day before yesterday i felt really awful, very dizzy and light-headed with the weakness that accompanies that POTS state. I was in bed most of the day. Yesterday i woke up feeling better but still spent the morning in bed and did as little as possible until getting ready to go out. I felt ok and it was so nice that my body was co-operating.

The concert was really good. I did not find the noise too loud as the acoustics are great at the concert hall, it is a clean sound. The last concert i went to was in an arena and it was so loud and bad quality that i was actually reduced to tears – it was so painful and i could not believe all the other people there looked fine and like they were not noticing anything wrong! I did manage to stay (just) but i found it very uncomfortable. I knew this time would not be the same but i took ear plugs anyway! I was so pleased to be in the wheelchair as the chairs there would have been no good for me at all. So glad i have it at last.

We had a good view and when Eliza Carthy came on stage i literally started crying (for a good reason this time!). I was suddenly overwhelmed to have made it out, to be there at all. All the good memories/feelings associated with her and the times i have seen her perform in the past came over me in a flood and i just wanted to give her a hug to celebrate seeing her again (of course i did not, if only because the stage looked too high to scale!). After a little cry i felt more able to relax and enjoy the concert without all those feelings getting in the way; more like a normal person would enjoy it, rather than a fun-starved ill person! The lyrics at the start when i was crying were something like: “thank you lord for letting me live another year” and i felt my own gratitude for being able to go to a concert again.

The concert was called “Murder, Misery and then Goodnight”, after a Kristin Hersh album. She was there, as well as Handsome Family, Tim Eriksen, Eliza Carthy and Howe Gelb. It was ” an evening of the darkest twisted murder ballads” which sounds miserable, but they actually sometimes had a darkly comic edge to them, and there were lots of laughs. It was part of an Americana festival and the tone was a mixture of folk and blues/gospel – i don’t know how to describe it; a bit like Oh Brother Where Art Thou soundtrack! There were some great songs where we all sung the chorus and in that small venue it worked really well. A man played a saw, as well as some other odd percussion things and it worked really well with the sinister lyrics. I was amazed!

Tim Eriksen started the concert standing at the front of the stage in a cloud of smoke holding just a tiny battered book and just sang in that real southern style, completely unaccompanied and it felt like being at the theatre! I knew then it was going to be a great night. What a powerful start. He looks like a really interesting artist too, i had not heard of him before but his biography is very interesting and varied and he worked on the music for Cold Mountain and helped teach the actors to sing for it, apparently! You can hear a bit of him here.

Eliza Carthy was just amazing. My partner says that they all lead on a similar number of songs, but it seemed like she had a much bigger input. I think this is because she was able to join in with other’s songs, either to sing or play the fiddle as back up to the lead artist. Sometimes it was clear that this had not been practiced and she just joined in, tentatively at first to get a feel for the chords and song then just went for it – amazing to watch. There was a spirit of just joining in on each other’s songs, having a jam, but some looked more confident to do that than others.  Her own songs often started with just her voice, singing to a light foot tap and it was spine-tingling, then the song would gradually build to full instrumentation. I rarely listen to her music at home (I only listen to a very few select artists actually as i often find it hard to listen to music, and can rarely multi-task – i.e. listening to music is an activity in itself, not a background thing which limits when it can be done) but i am a huge fan. Her talent and what she has done to shake the dust off folk music is admirable. If she is playing near you,  and you are able ,go see for yourself! Even if you are not usually a folk music fan, you will not regret it. Quality like her do not come along often.

I felt the concert was really long, in a good way, I felt that the effort of going was worth it as they gave us so much, so many songs and a great performance. It filled me up with good experiences/feeling that i can draw on for a while. It also gave me some confidence that I might be ok to do the odd different thing while on holiday (coming up in a few weeks) as i have been worried that i will just feel so awful the whole week it will just be a change of walls rather than much in the way of new experiences. We shall see. Anyway, i am so happy and grateful that i went out last night, whatever comes next.

feel the need to empty my thoughts, and thought here would be as good a place as any.

Woke up in lots of pain again today. my back hurts all the way from top to bottom, spreading out from the spine, under my shoulder blades, around my waist, over my shoulders, up into my skull. this pain seems worse recently, though it is always present to some degree. It is also more in my arms and legs than usual, the heavy aching that feels like my muscles are clenched and i should stretch, but i don’t know if that will aggravate it and finding the right positions is hard when standing makes me so dizzy.

I have has some benefit from the Gabapentin, itch-wise if not straightforward pain-wise, a few days with just a few odd sensations but nothing that developed, plus bad for a while after a bath. A big improvement. Then the last two days i have had quite long-lasting attacks in the mornings, and a bit more discomfort at night, though not too bad. I just hope it is not creeping back in. I tried not to get my hopes up, but it feels like a blow. Now i wonder how reducing the anti-histamines will go – are they doing anything or not? I don’t want to have to endure more itching to find out.

Starting to worry about our holiday. Less than 3 weeks to go and i wanted to be feeling better than this. Obviously. Had hoped to get out and about more this summer but it feels like it is slipping away while i battle these pesky but surprisingly incapacitating symptoms on top of the usual fatigue etc. I do now have a wheelchair which is comfortable, and have been out for a little trial run around the local streets and my partner is happy with how it feels to push. I hope we can get out to use it as it took three days to feel able to do that 15 minute “walk”.

I know that i will enjoy my holiday and will have fun during my better moments. My friend is coming to join us for part of it and i only see her once a year and i can’t wait to see her (though she will need re-training now that hugs are so painful if done in the usual way!). It will be good just to hang out, but i suppose i cannot help but want to do a little bit more. I have seen some boat trips that go to a nearby island, for example. I would really like to do that. They say there is a disabled-friendly path on the island, so maybe my wheelchair will go on a boat! Maybe i am being unrealistic. The thought of getting on a boat right now is not apealing, but perhaps my body will comply when the time comes? Sometimes these things come off… but will the rest of the holiday be worse if i do a big thing like that? Can i just have a week where i don’t have to face these conundrums? no? i thought not.

One thing i am really looking forward to is sitting somewhere and doing some drawing outside with my friend. She has agreed to come with me. it will be fun to sketch with a friend. I am pretty sure i can manage that.

Went to the hospital again today to see the POTS specialist.

Firstly she has started me on Gabapentin for pain and itching – she had mentioned it last time and I am so glad she was still keen for me to try it as I have read about it and talked to people who take it and it does seem a fit with the problems I am having. I asked her if it is basically that I am having symptoms like Fibromyalgia (FM); that it is neuropathic pain and she said yes, and that it is common with CFS and that an additional diagnosis would not help me (there are  additional treatments recommended for FM so there is no point).

This brings me to the POTS medications. There are no treatments recommended specifically for POTS, like ME/CFS and FM (or is there one for FM in the pipeline? I forget). She started me on a new drug last time which is an angina drug (Ivabradine) to slow my heart rate to see if that helps. I am unsure if it has helped but I think that it possibly has helped a bit. It has been hard to judge as it is a small dose and also there has been so much going on with my itching, pain and sleeplessness that I have barely been thinking about my POTS symptoms (but that may be a sign in itself that it is working!). But all this is now irrelevant as my GP has said I cannot take the drug as it is not a recommended treatment for my condition and it won’t fund it, whether it helps or not. Seeing as there are no drug treatments listed for POTS they are basically saying I will not be treated, even if the specialist thinks it might help. This leads to the conclusion that the only reason I AM being treated at all (I take Midodrine, an unlicensed drug that I get through the hospital) is ironically BECAUSE the drug is unlicensed so the specialist can give it to me (I think because it is part of research) and override the GPs who have complete control over what drugs can be prescribed. Apparently even in the US where I thought POTS was much more accepted and treated there are no drugs trialled and approved for it. I see again how very lucky I am  to be getting Midodrine. It seems ridiculous that a seriously disabling condition that can be easily tested for and monitored is not researched more widely.

I am happy to report that Gabapentin is an expensive drug (I want to make them suffer now, ha ha!) but that they cannot deny me that, as it is listed for neuropathic/nerve pain AND itching.  She said if it helps I can then cut down on the anti-histamines which would be good, I don’t want to take quite so many things! 

One good thing is that she is putting a note to the GP to try me on a sleep medication (I did not catch the name) if my sleep does not improve once the Gabapentin starts working, so it is nice to have that option if I need it, without having to wait for months for the next appointment to discuss this.

I asked if other GPs allow people to take the Ivabradine for POTS and she said my GP is the FIRST to deny the patient access to it when she has recommended it! I am shocked about this and asked how I could challenge it. She said I could go and talk to them, but apart from that there is little I can do, except change GP! I am not happy with my GP but I always thought maybe it would be the same anywhere. I would consider changing (as I have to get a taxi/lift to the existing one anyway, albeit a very short ride) but how would I know if  it would be any better before I got there? As I cannot say for sure that the Ivabradine really would help me (as I have not been allowed to give it a proper try) I do not have a very strong case to argue anyway… I also worry that a new GP would see that I had been refused and think I am going to be a troublesome new patient to have and not want me and my mammoth medical files transferred over to their practice. This is all about money.  I don’t think they can say no, but there is little point in moving if their attitude is as negative towards me as it is where I am. It is a concern in these economic times. I am unhappy that my GP seems to be saying no when others say yes to this drug. Should they have the power to choose, and operate a “postcode lottery”? As it is not the sanctioned use of the drug I suppose it is down to their discretion, but when there are no drugs approved for a condition where does that leave us? Without treatment is where. Apparently there is little interest in researching this rare condition (but would it be seen as so rare if people were actually diagnosed properly?). It it not about helping people who are suffering from the most disabling conditions, it is all about making money, after all.

Well I cannot hold back any longer in a little scream about my continued itching! Arghhhhhh! It is driving me up the walls.

Quick background in case you have not been concentrating!
Had itching for ages with no rash to speak of (last couple of years getting worse and worse)
Went to dermatologist – got diagnosis of “possible physical urticaria” – got antihistamines – took them for 6 weeks
Went back to dermatologist – itching has seemed about 50% better – so she changes one antihistamine, adds another and ups the dose of the other. Now i am on 3 different types.
Itching has been getting worse again and i really think just about as bad as it ever was.

One great thing initially has been that the night-time anti-histamine really helped my sleep, and i felt better some days than i had for a long time. I realised that although i sleep a lot i am not getting good quality sleep and this is certainly not helping how i feel every day. Unfortunately this has pretty much worn off, despite upping the dose. I am now wondering if the better sleep was actually all that calmed my itching down and it is nothing like a normal itch at all!

The warmer weather may be contributing, but i have no idea why it is so bad. It never went away but it has got back to the point of hardly ever not being there. In between proper attacks it is hovering and threatening. For example, last week i was wearing some thinner pyjamas, lovely cotton like a bed sheet, nice and smooth and not irritating at all. I also was wearing my slippers that go up to the ankle, also very soft. There was no gap between them. I opened the window as it was a sunny and warm day and just the draft from that one window started my lower legs off, THROUGH the fabric of my pyjamas. I mean, really i feel like there is no safe situation and it can go off at any time, however careful i am. Bed is a nightmare (you know, touching the bedding is hard to avoid!) and it is affecting my sleep. Don’t even get me started on bathing and shaving my legs which is awful but if i don’t it is also a bristly itching nightmare. I have tried a light-based hair removal system to try to rid myself of leg hair for longer periods and it has not worked yet. I am beyond fed up as it cost a fortune. I am still giving it a go for now.

So, i have one week to wait until my next hospital appointment with the POTS specialist, who talked about Gabapentin on my last visit. I am hoping she is still willing to try me on that and that it might actually help with this itching pain. I am strongly of the opinion it is nerve-pain or over-active pain signals or something like that, so this drug could help. My skin is ultra sensitive to touch, so much so that it can be like an electric shock to have something brush past me. It is not just my startle reflex, which is also a bit over the top, it is my skin. There are also very sore tender points on my skin, often like a small lump or knot under the skin and this is often where an itch seems to originate, above the site of the internal bruised-feeling. My back is also really sore and affecting my sleep too. My arms ache and my wrists cannot bear weight as they hurt. These pains seem to be worse when i have not slept, and also when the itching is at it’s worst. The connection, it seems to me, is neurological. I think you can see i am pinning many hopes on this drug.

One other thing is that there does seem (after a browse online) to be some connection between Dysautonomia (POTS is a form of Dysautonomia) and Hives/ mast cell disorders. I don’t really understand it but i think i will ask the specialist what she knows about this too next week. (Mast cells release histamine when they break down and this creates itch – this should, however, be helped with antihistamines!) Does anyone know anything about this?

If Gabapentin doesn’t help i do not know what to do next. I am not sure the dermatologist has any other ideas. I could stop my medications and see if any of them are contributing to the problem, but I really need them and the thought of stopping them, even for a short time, fills me with horror. We have our week away on holiday booked in next month and I cannot mess up my medications and threaten that. I can only hope the itching will have improved by then, or it will not be as much fun as I really hope and need it to be!

ME/CFS Awareness

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