Two months now since the beginning of the meltdown.... Legs still a bit fizzy, feet now feel like they have thick felt glued to the soles where previously it was tar!
I would say I'm 85-90% better. I went for a walk/scramble in some steep woods today, in one of the first warm springy day we've had this year. Sun's shining, sap's rising and my legs can feel it. I can't wait to get back on form...I can feel now that every day I'm just a little bit better.
I have a neurologist appointment on Thursday - first one since being diagnosed. At last! - ironic that it's just at the tail end of the relapse. But it's a good thing; it means I'll be in the loop with all the medical stuff...
Showing posts with label ms. Show all posts
Showing posts with label ms. Show all posts
Saturday, 19 March 2011
Sunday, 6 March 2011
tapping and fainting
an interesting twenty four hours... a friend of mine is learning a method of doing healing through mental imagery and tapping acupressure points. I can't remember exactly what it's called, but she refers to it mostly as "tapping". I agreed to be a guinea pig, as she needs to get some case studies under her belt. We had our first session together last night. We had a brief interview style discussion to begin with, so she could get to know what really gets to me about the MS, and to focus on my fears and frustrations. Then she got me to repeat what she said whilst tapping a series of pressure points. The phrases first used were very negative, such as "these damn feet feel coated in tar", but then went on to things like "even though my feet feel like they're coated in tar, I completely love and respect myself".
There was a bit more detail than that, but that's the gist. When I first started tapping, the base of my cranium suddenly felt really warm, and as it progressed I felt quite flushed, and as we moved towards the more positive statements, I started to feel quite euphoric. There was a point during the process, where you focus on your fears, and repeating the phrase "what if this is it?" made me feel like I was going to cry! That's not unusual at this stage, apparently. I think if I had done this exercise three weeks ago I would have been howling at that point; that's why I think that I was so euphoric - I felt the emotional response rise in me, but I found myself resilient, and it said to me that I really have reached a point of resigned acceptance of my lot!
I don't think I showed much in the way of any physical benefits/changes from this first session, though I think she's planning to dig a little deeper next time (I am a tough nut to crack!).
Interestingly, and quite alarmingly,I fainted on the night I did the tapping, several hours after. I had a bit of a headache when I went for the tapping, it cleared up whilst we were doing it, but then came back later so I went to bed. I woke up in the night feeling really thirsty. I went to the loo, had a drink, then went for a wee. As I sat on the loo I could feel myself starting to have a whitey...I was nauseous, my head was spinning, I felt really disorientated, my heart was racing. It was quite scary, I hadn't been drinking or anything, and I'm not on any meds, but it felt like I was really out of it. I eventually got it together to grab a pukey bowl and head back to bed when I must have very briefly fainted. I was conscious again by the time I hit the floor 'cause I remember the loud thud and wondering why I had fallen over. I was very lucky! we have a tiny bathroom and I fell towards the sink, with only about 2ft between the sink and the door...I don't think I got one bruise to show for it though! graceful or what?!
When my husband heard the bang he came running, and was knocking at the door straight away. I hauled myself up to a sprawled sitting position and unlocked the door. Somehow he managed to squeeze into the bathroom to rescue me and get me to bed.
Now I am not ascribing this episode to anything in particular. But I have never fainted before in my life, and I have had many whiteys, for one reason and another. But it is an interesting coincidence that I had my first tapping session on that day...and the lady who led the session with me asked me to let her know of any perceived effects...hmm!
x
There was a bit more detail than that, but that's the gist. When I first started tapping, the base of my cranium suddenly felt really warm, and as it progressed I felt quite flushed, and as we moved towards the more positive statements, I started to feel quite euphoric. There was a point during the process, where you focus on your fears, and repeating the phrase "what if this is it?" made me feel like I was going to cry! That's not unusual at this stage, apparently. I think if I had done this exercise three weeks ago I would have been howling at that point; that's why I think that I was so euphoric - I felt the emotional response rise in me, but I found myself resilient, and it said to me that I really have reached a point of resigned acceptance of my lot!
I don't think I showed much in the way of any physical benefits/changes from this first session, though I think she's planning to dig a little deeper next time (I am a tough nut to crack!).
Interestingly, and quite alarmingly,I fainted on the night I did the tapping, several hours after. I had a bit of a headache when I went for the tapping, it cleared up whilst we were doing it, but then came back later so I went to bed. I woke up in the night feeling really thirsty. I went to the loo, had a drink, then went for a wee. As I sat on the loo I could feel myself starting to have a whitey...I was nauseous, my head was spinning, I felt really disorientated, my heart was racing. It was quite scary, I hadn't been drinking or anything, and I'm not on any meds, but it felt like I was really out of it. I eventually got it together to grab a pukey bowl and head back to bed when I must have very briefly fainted. I was conscious again by the time I hit the floor 'cause I remember the loud thud and wondering why I had fallen over. I was very lucky! we have a tiny bathroom and I fell towards the sink, with only about 2ft between the sink and the door...I don't think I got one bruise to show for it though! graceful or what?!
When my husband heard the bang he came running, and was knocking at the door straight away. I hauled myself up to a sprawled sitting position and unlocked the door. Somehow he managed to squeeze into the bathroom to rescue me and get me to bed.
Now I am not ascribing this episode to anything in particular. But I have never fainted before in my life, and I have had many whiteys, for one reason and another. But it is an interesting coincidence that I had my first tapping session on that day...and the lady who led the session with me asked me to let her know of any perceived effects...hmm!
x
Saturday, 5 March 2011
a nervous itch
well, the experimental med-free thing seems to be going well. I can't honestly say I'm feeling a whole lot worse without, so I have no immediate plans to get back on them. The bonus plus side is that I could share a bottle of beer last night...oh the joy!
The only development in symptoms I've had since my last post is the development of an infuriating (but occasional) itch around my hip area. It occurred before I finished taking the meds, so I doubt it is withdrawal symptoms (although that can be one of the symptoms). It's an annoying one; if you try to scratch the itch it moves deeper in and becomes an internal tickle...confirms to me that it's definitely a neuro thing, rather than skin.
Yesterday I invested in my resolve to sort out a fitness programme, I bought myself a swimming costume, and today I'm going to find out what aqua-fitness courses they run in the area. I'm actually really looking forward to it, and even dreamed I was doing aerobics at the bus stop last night!
x
The only development in symptoms I've had since my last post is the development of an infuriating (but occasional) itch around my hip area. It occurred before I finished taking the meds, so I doubt it is withdrawal symptoms (although that can be one of the symptoms). It's an annoying one; if you try to scratch the itch it moves deeper in and becomes an internal tickle...confirms to me that it's definitely a neuro thing, rather than skin.
Yesterday I invested in my resolve to sort out a fitness programme, I bought myself a swimming costume, and today I'm going to find out what aqua-fitness courses they run in the area. I'm actually really looking forward to it, and even dreamed I was doing aerobics at the bus stop last night!
x
Thursday, 3 March 2011
testing times
my Baclofen tablets (anti spaz tabs) ran out just over 24 hours ago. I have a fresh supply, but I plan to take a holiday from them. So far, my legs are still attached and working. Stiffer than yesterday, but bearable so far - though I've not been further than the kitchen yet! Today is quite a testing day on my legs. I need to walk the dog before work, then I have a four hour block of lectures to sit through, and then a walk up the hill to meet no. 1 son to take him for dinner. oh and it's referendum day today, so I guess a trip to the polling station too, after work.
I asked the doctor yesterday if there had been any progress in getting to see a neurologist or an MS nurse.There hasn't been so much as an acknowledgement slip in over a month since my GP wrote and requested an appointment. He said the system was really bad, and the waiting list for a neurologist is very long. I thought six months with no contact was already quite a long time! So he wrote another letter...it's not in my nature to nag people and be a thorn in people's sides, but I've been told it's the only way to actually get noticed by the NHS...we'll see! I can't help suspecting that if I was in the affluent South, I would be on first name terms with my neurologist by now!
I asked the doctor yesterday if there had been any progress in getting to see a neurologist or an MS nurse.There hasn't been so much as an acknowledgement slip in over a month since my GP wrote and requested an appointment. He said the system was really bad, and the waiting list for a neurologist is very long. I thought six months with no contact was already quite a long time! So he wrote another letter...it's not in my nature to nag people and be a thorn in people's sides, but I've been told it's the only way to actually get noticed by the NHS...we'll see! I can't help suspecting that if I was in the affluent South, I would be on first name terms with my neurologist by now!
Sunday, 27 February 2011
use a stick when your spider-legs feel sick
So I'm now coming up for two months since the beginning of the current relapse, and things are still not back to normal. My legs are less uncomfortable now, but overall I would say they feel weak, wobbly and tired. When I wake up, and in the evenings, or when I've been over doing things, my legs start to feel tight (my "invisible stockings" go back on!), and sometimes they feel sick! - that's a tricky one to explain, but imagine the feeling you get in the pit of your stomach just before you're sick? well that's how it feels in my legs! Sometimes, when the invisible stockings have done their worst, my legs just want to curl up under me and it brings to mind how the legs of a dead spider curl up; but spider-legs don't give such an attractive and upbeat spin on things as invisible stockings, so 'll just leave that one right there!
I have recently bought myself a stick to help me keep my balance, as I continue to walk like a drunkard. It's quite odd. It feels a bit like coming out! Suddenly people are aware that something is going on with my legs, and it's led to many conversations..I don't mean to be churlish, I know it's cos they care, but sometimes I don't feel much like going over it again. But talking to people about it is better than getting the sad, sympathetic smile from people...that just pisses me off!
I think I'm getting my own head round things more now. I know that I resisted using a stick for too long because I was in denial about needing one, and it felt like a big thing to actually be seen using one. I think it was an important part of my acceptance of the MS. To recognise that my mobility is impaired and rather than seeing it as accepting defeat, seeing it as taking a positive approach to dealing with the challenges my body throws at me.
I am going to have a medicine holiday on Tuesday, for two days. I'm on prescription anti-spaz tabs which run out on Tuesday, but I next have a docs appointment on Thursday, so I'll go cold turkey for a couple of days to guage where my body is at when left to fend for itself...it will be interesting if only to see how effective the anti-spaz tabs actually are, as when I first went on them I had only been relapsed for a week and the full tidal wave hadn't really hit me yet.
x
I have recently bought myself a stick to help me keep my balance, as I continue to walk like a drunkard. It's quite odd. It feels a bit like coming out! Suddenly people are aware that something is going on with my legs, and it's led to many conversations..I don't mean to be churlish, I know it's cos they care, but sometimes I don't feel much like going over it again. But talking to people about it is better than getting the sad, sympathetic smile from people...that just pisses me off!
I think I'm getting my own head round things more now. I know that I resisted using a stick for too long because I was in denial about needing one, and it felt like a big thing to actually be seen using one. I think it was an important part of my acceptance of the MS. To recognise that my mobility is impaired and rather than seeing it as accepting defeat, seeing it as taking a positive approach to dealing with the challenges my body throws at me.
I am going to have a medicine holiday on Tuesday, for two days. I'm on prescription anti-spaz tabs which run out on Tuesday, but I next have a docs appointment on Thursday, so I'll go cold turkey for a couple of days to guage where my body is at when left to fend for itself...it will be interesting if only to see how effective the anti-spaz tabs actually are, as when I first went on them I had only been relapsed for a week and the full tidal wave hadn't really hit me yet.
x
Sunday, 13 February 2011
the feeling of feet
I think I've turned a corner of the relapse I've been experiencing in the last couple of days. My legs have started to come back a little here and there. Last night, however, I overdid it a bit. I went to the theatre, and lasted, only just, until the interval. My legs were so cramped up I could barely walk up the stairs to get out of the auditorium. That doesn't sound a whole lot better, I guess! I decided to not go back in for the second half. Though the play was good, I had really spent the best part of it hoping each scene was the last, and nearly crying with relief when the lights went up!
We were off to a friend's party after the play. The plan was to catch the bus and then walk the last kilometre to the house...what had I been thinking? By the time I escaped the theatre, the thought of a long walk in the cold and dark to find a house in a country lane that I'd never been to was daunting! Luckily, because I had left the theatre an hour early, I was just in time to catch a lift with a friend (with a small, but hugely appreciated detour to come and fetch us!) The rest of the night was lovely, but was spread over three floors which I found hugely knackering, so I didn't mingle as much as I might have done. But despite that, and the lack of alcohol due to the meds, I was still up chatting 'til about 7am!...I never expected to last that long!
I met a nice bloke who I thought was very inspiring. He only had one leg, and chose not to use a prosthetic limb. He said it slowed him down, especially at parties and outdoors etc, where the terrain is not flat. He was much more agile than me!, nimbly hopping over obstacles where I would need to clutch things/people to steady myself. He was telling me that, although it's been many years since he lost his leg, his body still occasionally forgets it's not there and causes him to fall after trying to use it. Well it struck me that I am labouring with the opposite conditions: I have perfectly working feet which I can't feel, and the irony wasn't lost on me of who was coping better!
x
We were off to a friend's party after the play. The plan was to catch the bus and then walk the last kilometre to the house...what had I been thinking? By the time I escaped the theatre, the thought of a long walk in the cold and dark to find a house in a country lane that I'd never been to was daunting! Luckily, because I had left the theatre an hour early, I was just in time to catch a lift with a friend (with a small, but hugely appreciated detour to come and fetch us!) The rest of the night was lovely, but was spread over three floors which I found hugely knackering, so I didn't mingle as much as I might have done. But despite that, and the lack of alcohol due to the meds, I was still up chatting 'til about 7am!...I never expected to last that long!
I met a nice bloke who I thought was very inspiring. He only had one leg, and chose not to use a prosthetic limb. He said it slowed him down, especially at parties and outdoors etc, where the terrain is not flat. He was much more agile than me!, nimbly hopping over obstacles where I would need to clutch things/people to steady myself. He was telling me that, although it's been many years since he lost his leg, his body still occasionally forgets it's not there and causes him to fall after trying to use it. Well it struck me that I am labouring with the opposite conditions: I have perfectly working feet which I can't feel, and the irony wasn't lost on me of who was coping better!
x
Wednesday, 9 February 2011
belly dance therapy!
I am very excited about starting belly dancing again. I had a thought that belly dancing should be therapeutic for my condition right now, as well as a way to gently exercise my body and regain some degree of balance and body awareness. Well, I looked into it on the web, and it seems it's tried and tested and seems to work well...
..I do believe that we instinctively know what's best for us if we listen carefully to ourselves. I had decided to up my oily fish intake on a hunch, and have since read that omega 3 acids are an important part of an ms "sufferer's" diet. I use the quotation marks as I'm still deciding how I choose to define myself, but you can be assured, "sufferer" will not appear in the title! That is a decision we are all free to make. I am inspired and encouraged by the words of my elderly grandma who, on experiencing an odd spots-before-the-eyes episode, instead of worrying about her inevitable decline, merely remarked how interesting it was as it was an experience she had never had before!...you've got to love my nan!
Another website that I found had ms specific gifts, with exactly the teeshirt I said I needed whilst stumbling along a public place the other day...
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