My First Day with MS: 3) what I did next (final)
Phew! This is probably cathartic. Sorry if I'm ranting, but this stuff is just on a roll now. If I buy you all alcohol will that count as payment for psycotherapy?
Initially I wasn't going to mention my diagnosis until it became "definitive". Then I read some more about how many years that could take. I also realised that I wasn't getting better very fast. I may never get back my pre-illness energy levels. Or I may. It's all subject to change without notice. Not that I have been radically sick, but I haven't been able to maintain anything like my normal life until this week, and that's under the influence of far too much caffeine. I know I won't be able to keep it up, but it's lasting long enough for me to put some replacements into my business and life.
I realised that if I told people, they would at least understand why I was suddenly cutting back my working hours, etc. In my business, my clients have strong personal relationships so it's hard for them to feel I've "abandoned" them in favour of another preferred client. Some of these people I've seen weekly for the last 5 years.
I also read several books from the USA that warned vehemently NOT to tell anyone. It started to feel that MS was some shameful something. I thought: SOD THAT!!
The same thing happened when I was diagnosed with PMDD (Pre-Menstrual-Dysphoric-Disease). I know how shameful mental illness can be viewed, plus I work with young mums who are at risk of PND, so I felt it was important to stand up and be counted. When someone made a slighting comment about 'mad' people in my hearing, I explained that I have a mental illness too, but I'm fine if I take my meds. Besides it's my hormones sending me mad, so I'm only insane 2 weeks per month. The person laughed nervously and said, "Hey, good joke moocow, you're not the neurotic type" I laughed too, and offered to show them where PMDD was written up in the DSMIV. The person stopped laughing and a slightly strained silence ensued.
I also read a couple of books and articles about coping with chronic illness, and they warned about the dangers of trying to "pass". (ie. pretend to be normal). I started to feel like I was in the closet or something.
In the next two weeks, my right hand decided to add spasticity to it's rollcall of exciting minor symptoms. One one occasion, I was having a take-away coffee, when I realised there was hot coffee all down my front. My hand had spasmed and thrown the cup all over me, and I hadn't felt it. As part of my job involves playing piano this was "of some concern" to me.
I also added aching all over my right side. Luckily that only lasted for around half an hour at a time, and only happened a dozen times. It did seem to be related to me overdoing it.
I also noticed short-term memory problems. Now I previously could forget like anyone, but when your memory is jogged, and you still come up empty it can be scary. I missed a couple of appointments, and asked people questions I had already asked and had answered.
I realised that it was probably not realistic to keep the whole thing under wraps. Besides, secrecy isn't really my style. You may have noticed if you're reading this.
I decided I was taking all of this rather too calmly. My main lesion is in the centre that controls emotion, so I asked my doctor if she thought I had a "lowered affect"? She laughed at me (kindly) and said, "Oh honey, if it was brain damage from the lesion you'd be more labile, more disinhibited, if anything." I checked with the neurology text books when I got home and she was right, not just being nice. I felt better.
I was also horrified by how little support there is for people in this grey area of "probable MS".
According to one study, 88% of people who have 1 episode of demyelination will progress to clinically definite MS. (As far as I could tell in the studies that cited stats, the other 12% of studyees died of unrelated illness before they developed MS.) Most developed it within 3 years.
People like myself, who have at least 1 lesion, and a history suggestive of MS, have an even better likelihood of becoming clinically definite. The timelines seem to be anywhere from 3mths to 18mths. I had a good look at my MRI results - they are an a CD, and are way cool. Check em out when you come over - I believe that there is at least one other lesion 'between' the slices of the MRI. I compared my MRIs with ones in medical text books to come to this conclusion. I am not a radiographer, but still, those lesions are pretty easy to see.
I looked for positive non-scary stories about MS, and it took a long time to find any. It's fair enough that the attention is on the people who are paralysed during attacks, and who need a lot of mechanical aids to get about at all. I want to help those people too.
Still, there doesn't seem to be anywhere for us to go. I rang the MS Society to ask about some of the diet therapies I'd read about. They agreed to send me some articles, because most of the diets are just snake oil. But they told me I couldn't join until I was "really" diagnosed.
I checked the criteria again, and realised that I'm as diagnosed as it's possible to be under the circumstances. I also realised that whether I was a "real" MSer or not, I still needed help to deal with this much. And there isn't much around. Not surprisingly, most people with MS report that the uncertainty is the single biggest issue they have.
Many years ago, I was in a bus crash. At the time lots of people told me I was very lucky - which I was, I wasn't dead and I wasn't too badly injured. But still, I had had a MOST unpleasant experience, some injuries that are still affecting me, and a case of Post-Traumatic-Stress-Disorder that made the next year of my life extremely difficult and scary. Finally my shrink told me that I the fact I was lucky not to be killed did not in any way detract from the fact that I'd had a traumatic experience.
Luckily, as part of my research of all things MS, I had the temerity to email questions to some major researchers in the field, including a neurological physiotherapist, and the head of the Australian Longitudinal Multiple Sclerosis survey. They were helpful and sympathetic.
Once I told my friends, family and clients, I received nothing but care and support. I feel very loved.
I decided not to make any irrevocable changes to my life for at least another 3-6 months, so I won't abandon you all to trek the Himalayas just yet. I also won't sell my business.
I will cut down the hours I work, and if you visit I will sometimes have to ask you to just sit quietly for 10mins while I process what we've said. If I become overloaded, I just stop taking information in. I'm pretty easy to overstimulate.
Initially I wasn't going to mention my diagnosis until it became "definitive". Then I read some more about how many years that could take. I also realised that I wasn't getting better very fast. I may never get back my pre-illness energy levels. Or I may. It's all subject to change without notice. Not that I have been radically sick, but I haven't been able to maintain anything like my normal life until this week, and that's under the influence of far too much caffeine. I know I won't be able to keep it up, but it's lasting long enough for me to put some replacements into my business and life.
I realised that if I told people, they would at least understand why I was suddenly cutting back my working hours, etc. In my business, my clients have strong personal relationships so it's hard for them to feel I've "abandoned" them in favour of another preferred client. Some of these people I've seen weekly for the last 5 years.
I also read several books from the USA that warned vehemently NOT to tell anyone. It started to feel that MS was some shameful something. I thought: SOD THAT!!
The same thing happened when I was diagnosed with PMDD (Pre-Menstrual-Dysphoric-Disease). I know how shameful mental illness can be viewed, plus I work with young mums who are at risk of PND, so I felt it was important to stand up and be counted. When someone made a slighting comment about 'mad' people in my hearing, I explained that I have a mental illness too, but I'm fine if I take my meds. Besides it's my hormones sending me mad, so I'm only insane 2 weeks per month. The person laughed nervously and said, "Hey, good joke moocow, you're not the neurotic type" I laughed too, and offered to show them where PMDD was written up in the DSMIV. The person stopped laughing and a slightly strained silence ensued.
I also read a couple of books and articles about coping with chronic illness, and they warned about the dangers of trying to "pass". (ie. pretend to be normal). I started to feel like I was in the closet or something.
In the next two weeks, my right hand decided to add spasticity to it's rollcall of exciting minor symptoms. One one occasion, I was having a take-away coffee, when I realised there was hot coffee all down my front. My hand had spasmed and thrown the cup all over me, and I hadn't felt it. As part of my job involves playing piano this was "of some concern" to me.
I also added aching all over my right side. Luckily that only lasted for around half an hour at a time, and only happened a dozen times. It did seem to be related to me overdoing it.
I also noticed short-term memory problems. Now I previously could forget like anyone, but when your memory is jogged, and you still come up empty it can be scary. I missed a couple of appointments, and asked people questions I had already asked and had answered.
I realised that it was probably not realistic to keep the whole thing under wraps. Besides, secrecy isn't really my style. You may have noticed if you're reading this.
I decided I was taking all of this rather too calmly. My main lesion is in the centre that controls emotion, so I asked my doctor if she thought I had a "lowered affect"? She laughed at me (kindly) and said, "Oh honey, if it was brain damage from the lesion you'd be more labile, more disinhibited, if anything." I checked with the neurology text books when I got home and she was right, not just being nice. I felt better.
I was also horrified by how little support there is for people in this grey area of "probable MS".
According to one study, 88% of people who have 1 episode of demyelination will progress to clinically definite MS. (As far as I could tell in the studies that cited stats, the other 12% of studyees died of unrelated illness before they developed MS.) Most developed it within 3 years.
People like myself, who have at least 1 lesion, and a history suggestive of MS, have an even better likelihood of becoming clinically definite. The timelines seem to be anywhere from 3mths to 18mths. I had a good look at my MRI results - they are an a CD, and are way cool. Check em out when you come over - I believe that there is at least one other lesion 'between' the slices of the MRI. I compared my MRIs with ones in medical text books to come to this conclusion. I am not a radiographer, but still, those lesions are pretty easy to see.
I looked for positive non-scary stories about MS, and it took a long time to find any. It's fair enough that the attention is on the people who are paralysed during attacks, and who need a lot of mechanical aids to get about at all. I want to help those people too.
Still, there doesn't seem to be anywhere for us to go. I rang the MS Society to ask about some of the diet therapies I'd read about. They agreed to send me some articles, because most of the diets are just snake oil. But they told me I couldn't join until I was "really" diagnosed.
I checked the criteria again, and realised that I'm as diagnosed as it's possible to be under the circumstances. I also realised that whether I was a "real" MSer or not, I still needed help to deal with this much. And there isn't much around. Not surprisingly, most people with MS report that the uncertainty is the single biggest issue they have.
Many years ago, I was in a bus crash. At the time lots of people told me I was very lucky - which I was, I wasn't dead and I wasn't too badly injured. But still, I had had a MOST unpleasant experience, some injuries that are still affecting me, and a case of Post-Traumatic-Stress-Disorder that made the next year of my life extremely difficult and scary. Finally my shrink told me that I the fact I was lucky not to be killed did not in any way detract from the fact that I'd had a traumatic experience.
Luckily, as part of my research of all things MS, I had the temerity to email questions to some major researchers in the field, including a neurological physiotherapist, and the head of the Australian Longitudinal Multiple Sclerosis survey. They were helpful and sympathetic.
Once I told my friends, family and clients, I received nothing but care and support. I feel very loved.
I decided not to make any irrevocable changes to my life for at least another 3-6 months, so I won't abandon you all to trek the Himalayas just yet. I also won't sell my business.
I will cut down the hours I work, and if you visit I will sometimes have to ask you to just sit quietly for 10mins while I process what we've said. If I become overloaded, I just stop taking information in. I'm pretty easy to overstimulate.