This weekend has been a mixture of feeling pretty weak and pathetic along with the continuation of the MS symptoms that have re-emerged and an agonising and relentless feeling of anger.
I am raging at the world.
Feelings of self-pity and 'poor me' wrack my mind and I am so bloody cross at everything.
Every little thing feels like a slight and to those poor souls - family and friends who I love dearly - who are just getting on with their lives and haven't been in touch to see how I am, well I'm afraid you have borne the brunt of my wrath.
If it is any consolation, I know I am being unreasonable and I also know that my anger is misdirected. But bear with me because at the moment, try as I might, I can't help it. I will sort my head out soon I promise. Normal service will resume soon.
I just need some sympathy at the moment. I don't want to be strong. I want people to see I need a bit of TLC. Just for a bit. Just an acknowledgement would suffice.
Boo hoo hoo!
The depth of my self indulgence knows no bounds.
Physically, I feel stronger than I did yesterday but I think a fair description of how I feel is: "Strength of the louse".
Standing up for too long make me feel light headed. And I keep falling asleep at the drop of a hat.
The scorched cheek syndrome has thankfully calmed down and yesterday I only took one anti-histimin and today (so far) none. So we are on the road to recovery.
My appetite is still on over-drive which I'm blaming on the steroids but if I'm perfectly truthful is probably because I am feeling blue. I wish I was one of those people, who in times of trauma forgets to eat. Ha! If only. I have the opposite. In crisis? Reach for the crisps. Feeling low? Swallow back that chocolate. I'm like a cliche but hey, it's my cliche so I'm gonna embrace it.
And on that note, I can hear the toaster so I'm going sign off. I've got to keep my energy up after all.
PS. I have a new follower on Twitter. They make walking sticks. Funky walking sticks I may add but walking sticks all the same. I'm hoping I will never have to use their service.
Monday, 19 November 2012
Saturday, 17 November 2012
Big A - round two
This week I underwent my second course of Alemtuzumab.
This is my experience of it.
Day one
Fear and dread were to two overriding emotions which gripped me as I walked through the ward doors. I had worked myself up into a bit of a state truth be told. And the fear was all related to the canula of all things. I didn't want it in me and I didn't want my veins to get sore like they did last year.
The dread was because I knew the treatment was not going to be pleasant and I didn't want to feel awful.
Now before you accuse me of being ungrateful, I know I am very lucky to be getting this treatment and I am fully aware that I am one of the lucky ones - but it doesn't stop that feeling of self-pity creeping in and moments of darkness starting to crawl around my head.
But there I was, and it was time to get cracking.
There was a bit of a delay in the actual treatment starting and I managed to eat a whole family size bag of wine gums before the dreaded canula had even been inserted. Something which I regretted as soon as the steroid was hooked up because the filthy metallic taste came back and haunted me for the rest of the day.
Needless to say, along with the metallic taste came the increase in appetite and I managed to forage my way through various chocolates / biscuits / crisps and anything else I could lay my hands on.
After an hour, came the actual drug and as I lay there for the next four hours I managed to eat more in between napping and getting my blood pressure, temperature and heartbeat checked every thirty minutes.
Overall, the first day hadn't been a bad experience. That was until another MS patient getting his second dose of the Big A suddenly and without warning began having a terrible reaction to the drug.
He seemed to be in an incredible amount of pain and was crying and moaning. The nurses all rallied around and afterwards I found out his temperature had rocketed. He was moved to a different ward and I didn't see him again. But it was very upsetting to see someone in such a state and it panicked me that I would also react in a similar way.
That night, I began feeling quite nauseous and started getting 'scorched cheeks' but anti-sickness tablets and anti-histimins sorted me out. It was not an easy night's sleep though.
Day two
Again the scorched cheeks plagued me on waking as did my increase of appetite but the treatment got under way pretty soon after waking and I managed to nap my way through it. I felt very tired.
The reaction of the man the day before was still on my mind and I found out that he was doing ok and would be continuing the treatment but he would be getting it over eight hours rather than four. I felt very relieved for him.
The treatment itself went pretty much as expected.
It was later that I started to feel pretty awful. I had terrible nausea. The first anti-sickness tablet didn't help and I was given a second which although took the edge off didn't actually get rid of the feeling. I have to say I felt pretty dreadful at this point.
I had a very disturbed night's sleep and the re-emergence of some past MS symptoms came back to haunt me - the worse being vertigo. It woke me in the night as I turned my head in my sleep and my brain felt like it was rolling around and around in my skull. It passed off but every time I moved my head too quickly, the feeling would come back.
During the night, after one of the observation checks by the nurse, I went to spend a penny and through my half closed sleep eyes looked at myself in the mirror as I washed my hands. I was amazed to see that my nose and chin had developed a strange hue of red. In the morning, my cheeks had also succumbed to the colour. Thankfully an anti-histimin came to my rescue.
Day three
The last day of the treatment couldn't come fast enough for me. I had suddenly found myself enveloped in a cloud of self-pity and it took all my energy not to cry at the slightest thing.
My scorched cheeks continued to glow as the anti-histimins wore off and as well as the vertigo symptoms I was also finding it hard to focus my eyes.
All of these past-symptoms were to be expected, I was reassured. It was very common for this to happen and it should wear off in a couple of days.
The treatment began early. But this time there was no continuous scoffing of sweets - the nausea was too bad. Again another anti-sickness tablet was administered which took the edge off.
Then suddenly as a young nurse who I had not met before came to take my obs, I suddenly broke down into tears. The poor girl didn't know what to do - which I was grateful for because everyone knows if you are too sympathetic to someone in tears, you can be trapped talking to them for hours about every woe. I apologised, said I was tired and managed to stop the crying. I was angry and annoyed at myself. I didn't know where this was coming from. The feeling of general unfairness and self-pity had started to take me over.
Thankfully, as soon as the treatment was done, I was unhooked and allowed to go home. It was all quite sudden really.
Home though didn't make the scorched cheeks or the nausea disappear and it was only the packets of drugs I was given that managed to make a difference.
Day one after the treatment
Two words described my general mood - anger and resentment. All the old feelings about MS came to bite me again. I felt so bloody angry at the world and I felt so bloody awful due to the treatment.
I didn't remember feeling as bad as this last year, but my husband says I was.
I felt weak, I felt awful, I felt like I had been through the mill. My cheeks continued to blaze and I felt so lethargic. The nausea was there on and off and again I couldn't stop crying.
It wasn't a good day. In fact I would go as far as to say it was one of my worst. Ever.
Day two after the treatment
And now we are here on day two after the treatment. The vertigo is still there as is the poor eye focus. The scorched cheeks are ever present and I now feel like I am walking under water - everything is moving slowly.
My patience is still at snapping point and I still feel rubbish. But at least I am starting to feel like there is a light at the end of the tunnel now.
I realise the anger I have been feeling is partly because I want someone to acknowledge that I am having a shit time. I want someone to acknowledge that yes it is that bad actually. I want someone to acknowledge that this is ball-aching for me.
But then maybe I should stop putting on a front when people ask me how I am doing and instead of telling them that yep, I'm doing great, I should for once be honest and tell them the boring truth that MS is a killer to try and get your head around.
I know I am lucky in many ways but right now I am struggling. Really struggling.
This is my experience of it.
Day one
Fear and dread were to two overriding emotions which gripped me as I walked through the ward doors. I had worked myself up into a bit of a state truth be told. And the fear was all related to the canula of all things. I didn't want it in me and I didn't want my veins to get sore like they did last year.
The dread was because I knew the treatment was not going to be pleasant and I didn't want to feel awful.
Now before you accuse me of being ungrateful, I know I am very lucky to be getting this treatment and I am fully aware that I am one of the lucky ones - but it doesn't stop that feeling of self-pity creeping in and moments of darkness starting to crawl around my head.
But there I was, and it was time to get cracking.
There was a bit of a delay in the actual treatment starting and I managed to eat a whole family size bag of wine gums before the dreaded canula had even been inserted. Something which I regretted as soon as the steroid was hooked up because the filthy metallic taste came back and haunted me for the rest of the day.
Needless to say, along with the metallic taste came the increase in appetite and I managed to forage my way through various chocolates / biscuits / crisps and anything else I could lay my hands on.
After an hour, came the actual drug and as I lay there for the next four hours I managed to eat more in between napping and getting my blood pressure, temperature and heartbeat checked every thirty minutes.
Overall, the first day hadn't been a bad experience. That was until another MS patient getting his second dose of the Big A suddenly and without warning began having a terrible reaction to the drug.
He seemed to be in an incredible amount of pain and was crying and moaning. The nurses all rallied around and afterwards I found out his temperature had rocketed. He was moved to a different ward and I didn't see him again. But it was very upsetting to see someone in such a state and it panicked me that I would also react in a similar way.
That night, I began feeling quite nauseous and started getting 'scorched cheeks' but anti-sickness tablets and anti-histimins sorted me out. It was not an easy night's sleep though.
Day two
Again the scorched cheeks plagued me on waking as did my increase of appetite but the treatment got under way pretty soon after waking and I managed to nap my way through it. I felt very tired.
The reaction of the man the day before was still on my mind and I found out that he was doing ok and would be continuing the treatment but he would be getting it over eight hours rather than four. I felt very relieved for him.
The treatment itself went pretty much as expected.
It was later that I started to feel pretty awful. I had terrible nausea. The first anti-sickness tablet didn't help and I was given a second which although took the edge off didn't actually get rid of the feeling. I have to say I felt pretty dreadful at this point.
I had a very disturbed night's sleep and the re-emergence of some past MS symptoms came back to haunt me - the worse being vertigo. It woke me in the night as I turned my head in my sleep and my brain felt like it was rolling around and around in my skull. It passed off but every time I moved my head too quickly, the feeling would come back.
During the night, after one of the observation checks by the nurse, I went to spend a penny and through my half closed sleep eyes looked at myself in the mirror as I washed my hands. I was amazed to see that my nose and chin had developed a strange hue of red. In the morning, my cheeks had also succumbed to the colour. Thankfully an anti-histimin came to my rescue.
Day three
The last day of the treatment couldn't come fast enough for me. I had suddenly found myself enveloped in a cloud of self-pity and it took all my energy not to cry at the slightest thing.
My scorched cheeks continued to glow as the anti-histimins wore off and as well as the vertigo symptoms I was also finding it hard to focus my eyes.
All of these past-symptoms were to be expected, I was reassured. It was very common for this to happen and it should wear off in a couple of days.
The treatment began early. But this time there was no continuous scoffing of sweets - the nausea was too bad. Again another anti-sickness tablet was administered which took the edge off.
Then suddenly as a young nurse who I had not met before came to take my obs, I suddenly broke down into tears. The poor girl didn't know what to do - which I was grateful for because everyone knows if you are too sympathetic to someone in tears, you can be trapped talking to them for hours about every woe. I apologised, said I was tired and managed to stop the crying. I was angry and annoyed at myself. I didn't know where this was coming from. The feeling of general unfairness and self-pity had started to take me over.
Thankfully, as soon as the treatment was done, I was unhooked and allowed to go home. It was all quite sudden really.
Home though didn't make the scorched cheeks or the nausea disappear and it was only the packets of drugs I was given that managed to make a difference.
Day one after the treatment
Two words described my general mood - anger and resentment. All the old feelings about MS came to bite me again. I felt so bloody angry at the world and I felt so bloody awful due to the treatment.
I didn't remember feeling as bad as this last year, but my husband says I was.
I felt weak, I felt awful, I felt like I had been through the mill. My cheeks continued to blaze and I felt so lethargic. The nausea was there on and off and again I couldn't stop crying.
It wasn't a good day. In fact I would go as far as to say it was one of my worst. Ever.
Day two after the treatment
And now we are here on day two after the treatment. The vertigo is still there as is the poor eye focus. The scorched cheeks are ever present and I now feel like I am walking under water - everything is moving slowly.
My patience is still at snapping point and I still feel rubbish. But at least I am starting to feel like there is a light at the end of the tunnel now.
I realise the anger I have been feeling is partly because I want someone to acknowledge that I am having a shit time. I want someone to acknowledge that yes it is that bad actually. I want someone to acknowledge that this is ball-aching for me.
But then maybe I should stop putting on a front when people ask me how I am doing and instead of telling them that yep, I'm doing great, I should for once be honest and tell them the boring truth that MS is a killer to try and get your head around.
I know I am lucky in many ways but right now I am struggling. Really struggling.
Friday, 9 November 2012
My MS adventure
Two things happened to me today.
The first was the realisation that in four days time I will be starting my second course of the Big A.
The second was the realisation of how much has happened since June 2010 when I was given the first definite hint I had MS.
So much has happened since that day when I spent an afternoon with my unborn son flourishing and fighting inside my body in a hospital ward with a sympathetic doctor called Ellie (whose kindness I will never forget and will always be grateful for) as I started wailing and mewling about the unknown and unpredicted future it looked likely I was facing now MS had reared its ugly head.
That day several sympathetic cups of sweet tea were presented in polystyrene cups and remained undrunk (because pregnancy had created an unwanted and unexpected aversion to my favourite beverage) and hope and ambition turned (temporarily I am pleased to say) to despair and fright.
Over the next months, the fear that my growing baby would be affected by the sensation loss I experienced from my toes, up and across my swollen belly to my chest was replaced by fear about how I would cope with a small infant.
And then the guilt. The guilt spilled from every pore. It invaded every thought, every conversation, every breath I took. MS and guilt had taken over my very being.
As if by magic, anger soon appeared. I raged. I cried. I hated. Oh how I hated. I became resentful and rebellious and impatient and generally a vile excuse for a human being.
It built up inside. All of the emotions, all of the unfairness of it all, all of the self pity. And suddenly I was cast into a dark, dark place. Was it depression? Possibly. Was it a break down? Maybe. Whatever it was the pent up emotion and pain was finally released over two weeks in tears. With every teardrop that fell, a little bit of hope returned. With every tissue thrown into the overflowing bin, a bit more of me started to return. Pain, someone said to me recently, is weakness leaving the body and with every tear I shed, the emotional pain was relieved.
Now I am here. I am me again. But this time I am me with MS. And you know what, I can cope with this. I have hope again. I'm going to be ok. I may not be the ok in the way I thought I would be before MS, but I'm going to be ok.
And in four days time, as I lie on the hospital bed with a drip attached to one arm and a bag of jelly babies being devoured, I won't be dwelling on the hand I have been dealt. Instead I will be dealing with it. I will be coping with it. And I will be ok.
The first was the realisation that in four days time I will be starting my second course of the Big A.
The second was the realisation of how much has happened since June 2010 when I was given the first definite hint I had MS.
So much has happened since that day when I spent an afternoon with my unborn son flourishing and fighting inside my body in a hospital ward with a sympathetic doctor called Ellie (whose kindness I will never forget and will always be grateful for) as I started wailing and mewling about the unknown and unpredicted future it looked likely I was facing now MS had reared its ugly head.
That day several sympathetic cups of sweet tea were presented in polystyrene cups and remained undrunk (because pregnancy had created an unwanted and unexpected aversion to my favourite beverage) and hope and ambition turned (temporarily I am pleased to say) to despair and fright.
Over the next months, the fear that my growing baby would be affected by the sensation loss I experienced from my toes, up and across my swollen belly to my chest was replaced by fear about how I would cope with a small infant.
And then the guilt. The guilt spilled from every pore. It invaded every thought, every conversation, every breath I took. MS and guilt had taken over my very being.
As if by magic, anger soon appeared. I raged. I cried. I hated. Oh how I hated. I became resentful and rebellious and impatient and generally a vile excuse for a human being.
It built up inside. All of the emotions, all of the unfairness of it all, all of the self pity. And suddenly I was cast into a dark, dark place. Was it depression? Possibly. Was it a break down? Maybe. Whatever it was the pent up emotion and pain was finally released over two weeks in tears. With every teardrop that fell, a little bit of hope returned. With every tissue thrown into the overflowing bin, a bit more of me started to return. Pain, someone said to me recently, is weakness leaving the body and with every tear I shed, the emotional pain was relieved.
Now I am here. I am me again. But this time I am me with MS. And you know what, I can cope with this. I have hope again. I'm going to be ok. I may not be the ok in the way I thought I would be before MS, but I'm going to be ok.
And in four days time, as I lie on the hospital bed with a drip attached to one arm and a bag of jelly babies being devoured, I won't be dwelling on the hand I have been dealt. Instead I will be dealing with it. I will be coping with it. And I will be ok.
Monday, 22 October 2012
Acceptance
Last week I reached a stage where I finally feel I've accepted that MS is part of me.
It happened without me even realising it.
Someone from work - who works in a different department - asked me if my son would like to go to her son's birthday party in November.
I replied that he would love to but he wouldn't be able to this year because I have been pencilled in for some hospital treatment so wouldn't be able to take him.
"Oh dear, everything alright?" she asked.
And then out it came.
"I have MS," I replied. "And I'm getting some treatment which means my immunity will be compromised so am trying to stay away from situations where germs may lurk. Not that your house is dirty or anything..." *Backtracking*
The words just came out.
And then she asked me questions.
And I answered without feeling uncomfortable.
It was just so matter of fact. It was just so normal.
For the first time, I didn't feel I had to hide. I didn't feel like I had to change the conversation. And I didn't feel self conscious.
In fact, the conversation was upbeat and littered with laughter.
To the point where someone else came up to join in the conversation asking what we were giggling about. And so I had to explain again. And again it was ok and pretty painless.
Maybe it is because I am finally in a place where although I am still furious about being dealt the MS card, I have started to accept that it is here to stay.
The dark times that have come and gone over the last two years have waned and I find myself laughing about it in what some might call a sick and twisted way but what I describe as gallows humour.
And after that first breakthrough with my unsuspecting colleague, the floodgates opened up.
I have started making plans in work explaining without any trace of self pity to those who need to know I have MS and am having treatment so things can't happen straight away.
On another occasion, I found myself having a conversation with a woman who had just had her first year anniversary of being clear of breast cancer sharing the shock, horror and absolute desperation of diagnoses and its aftermath. We both found ourselves describing emotions that the other identified with making us both realise that although vastly differing illnesses, the impact on our sanity has been very similar.
I don't know if I have accepted it for good or if my MS monster will throw something in my face to knock me off balance (literally and mentally).
At the moment I feel calm. Long may it continue.
It happened without me even realising it.
Someone from work - who works in a different department - asked me if my son would like to go to her son's birthday party in November.
I replied that he would love to but he wouldn't be able to this year because I have been pencilled in for some hospital treatment so wouldn't be able to take him.
"Oh dear, everything alright?" she asked.
And then out it came.
"I have MS," I replied. "And I'm getting some treatment which means my immunity will be compromised so am trying to stay away from situations where germs may lurk. Not that your house is dirty or anything..." *Backtracking*
The words just came out.
And then she asked me questions.
And I answered without feeling uncomfortable.
It was just so matter of fact. It was just so normal.
For the first time, I didn't feel I had to hide. I didn't feel like I had to change the conversation. And I didn't feel self conscious.
In fact, the conversation was upbeat and littered with laughter.
To the point where someone else came up to join in the conversation asking what we were giggling about. And so I had to explain again. And again it was ok and pretty painless.
Maybe it is because I am finally in a place where although I am still furious about being dealt the MS card, I have started to accept that it is here to stay.
The dark times that have come and gone over the last two years have waned and I find myself laughing about it in what some might call a sick and twisted way but what I describe as gallows humour.
And after that first breakthrough with my unsuspecting colleague, the floodgates opened up.
I have started making plans in work explaining without any trace of self pity to those who need to know I have MS and am having treatment so things can't happen straight away.
On another occasion, I found myself having a conversation with a woman who had just had her first year anniversary of being clear of breast cancer sharing the shock, horror and absolute desperation of diagnoses and its aftermath. We both found ourselves describing emotions that the other identified with making us both realise that although vastly differing illnesses, the impact on our sanity has been very similar.
I don't know if I have accepted it for good or if my MS monster will throw something in my face to knock me off balance (literally and mentally).
At the moment I feel calm. Long may it continue.
Tuesday, 28 August 2012
Big A shortage?
Things have been pretty brilliant recently.
I didn't delve too much into it in my last post, but I had been dealing with a bit of a mini breakdown.
The realisation that I had MS had hit me in a BIG way and what with trying to convince the rest of the world that I was fine thank you very much and trying to maintain that same facade in my private life, it all became a bit messy.
But I dealt with it.
I cried. I felt sorry for myself. I moaned. A lot. I lay on the sofa watching rubbish day time telly and thought about things.
Then I started to put it into perspective, and you know what, I feel ok. And feeling ok has made life so much easier.
I've taken steps to stop my energy levels dropping so even my fatigue is starting to feel manageable.
Don't get me wrong - life isn't perfect, but in this imperfect world I occupy, it's probably as good as it is going to get. And I feel at some kind of peace for the first time in a while.
Not content with having made a fortune first time around when the drug was first released to treat some forms of cancer, the drugs companies appear to be having a second bite of the cherry.
They have kindly withdrawn Alemtuzumab until they can get a new licence to sell it as an MS drug.
So this drug, which is helping so many people get on with their lives, is now in short supply to those who desperately need it.
Who knows when the supply will be restored? It's like some kind of nightmare.
You see (and now I am going to rant about why this is a really hard pill to swallow for me) I am now 35 years old. My husband and I would like another child but our plans have been put on hold because it isn't wise to have a baby within six months of having the treatment. Our plans are on hold because we want to get this treatment out of the way so we can concentrate on our family.
I am/was due to have my second dose of the treatment in November. Six months after that we hope to be crossing our fingers that we find ourselves blessed with another child on-the-way. I will be 36 then. Time is ticking on. And who knows if we will even be lucky enough to extend our family but we hope so.
Now we are in a position where my treatment could be delayed and this could mean we are forced to push back our plan to give our son a sibling. And at my age, I can't really afford to delay trying for a baby.
I'm trying not to worry. But I am. In fact, I can't stop thinking about it.
And I can't stop thinking about how getting richer seems to be more of a priority for some. And as a result, an army of people in the Campath Club, like me, who thought their life had been given back after it was snatched by the MS monster are now facing a world of uncertainty and despair again.
I didn't delve too much into it in my last post, but I had been dealing with a bit of a mini breakdown.
The realisation that I had MS had hit me in a BIG way and what with trying to convince the rest of the world that I was fine thank you very much and trying to maintain that same facade in my private life, it all became a bit messy.
But I dealt with it.
I cried. I felt sorry for myself. I moaned. A lot. I lay on the sofa watching rubbish day time telly and thought about things.
Then I started to put it into perspective, and you know what, I feel ok. And feeling ok has made life so much easier.
I've taken steps to stop my energy levels dropping so even my fatigue is starting to feel manageable.
Don't get me wrong - life isn't perfect, but in this imperfect world I occupy, it's probably as good as it is going to get. And I feel at some kind of peace for the first time in a while.
- And then I was rocked.
- And I am worrying.
- And I feel angry all over again.
- And it is all down to this:
Not content with having made a fortune first time around when the drug was first released to treat some forms of cancer, the drugs companies appear to be having a second bite of the cherry.
They have kindly withdrawn Alemtuzumab until they can get a new licence to sell it as an MS drug.
So this drug, which is helping so many people get on with their lives, is now in short supply to those who desperately need it.
Who knows when the supply will be restored? It's like some kind of nightmare.
You see (and now I am going to rant about why this is a really hard pill to swallow for me) I am now 35 years old. My husband and I would like another child but our plans have been put on hold because it isn't wise to have a baby within six months of having the treatment. Our plans are on hold because we want to get this treatment out of the way so we can concentrate on our family.
I am/was due to have my second dose of the treatment in November. Six months after that we hope to be crossing our fingers that we find ourselves blessed with another child on-the-way. I will be 36 then. Time is ticking on. And who knows if we will even be lucky enough to extend our family but we hope so.
Now we are in a position where my treatment could be delayed and this could mean we are forced to push back our plan to give our son a sibling. And at my age, I can't really afford to delay trying for a baby.
I'm trying not to worry. But I am. In fact, I can't stop thinking about it.
And I can't stop thinking about how getting richer seems to be more of a priority for some. And as a result, an army of people in the Campath Club, like me, who thought their life had been given back after it was snatched by the MS monster are now facing a world of uncertainty and despair again.
Monday, 6 August 2012
The Campath Club and other things
Funny how some days when you are feeling well and just getting on with the daily grind with nothing apart from the routine worries of 'where did I put my pen?' and 'I've run out of milk so no coffee for me' something can happen to make you suddenly be reminded that lurking under the surface is the beast of MS waiting to strike at any inopportune moment.
It happened to me yesterday.
I was working (yes it was a Sunday and yep I too think that working on a weekend should be banned!) and chatting (gossiping) to a colleague - let's call her Jemma - when someone who knew her but not me, came to join in the conversation.
Without giving too much away, the chap - let's call him Malcolm - who walked uninvited into our heady mix of laughter and intrigue is, to put it politely, a bit - well a bit more than a bit actually - of an odd ball. Highly intelligent, fantastic at his job but sadly lacking in any social niceties. And to put it bluntly, by stepping into the little tete-a-tete Jemma and I were enjoying, the laughter and gossip (which was highly interesting I might add) ceased rapidly.
And so the conversation turned into a work-mode one. You see there was a bit of a staffing crisis where someone had called in sick and I was attempting to drag some other poor soul into the office on a Sunday when all other right-minded people are enjoying a lie in with the Sunday papers and a big mug of coffee to stave off any remnants of wine/beer effects from the night before.
The discussion turned to the person - let's call him Joe - who had called in complaining of food poisoning. I confess Jemma and I both had suspicions this may not actually be the truth...
"Well," says Malcolm, "That's very unlike Joe to call in sick."
"Why do you say that?" I replied.
"Joe doesn't need to call in and pretend he is sick - he already has a fantastic excuse at hand. His trump card if you like."
My curiosity was piqued.
"Trump card?" I asked intrigued at what this fantastic excuse could be.
"Yes," said Malc. "His wife has MS or something equally degenerative so he doesn't need to pretend he's sick, he can just wheel out the excuse his wife is on the turn."
"...Oh... right," I heard myself say as I felt the crushing blow that I have MS hit me yet again. It was horrifying.
Neither the charmless Malc or the lovely Jemma know I also have MS and I certainly didn't intend to enlighten them.
But an uneventful day which had been rolling along pretty smoothly and one in which MS hadn't been on my mind at all suddenly came falling around me and I could feel myself analysing yet again the reasons why I have been unfortunate enough to be given this thing to deal with.
I'm trying to stop myself dwelling on this before I fall head first into that pit of despair which I have only recently managed to climb out of and wash myself off so I won't bore you any more with my mind-tripping reaction to Malcolm's seemingly innocuous comments.
So what else has been going on?
Well one thing that has absolutely delighted me is that I have been contacted by people via email who like me are in The Campath Club.
As I discussed with one of those emailers, it is like there is this secret underground movement of people who are about to / have had the Big A and when you finally make contact with one of them, no matter what other differences/similarities you have with them, there is this one huge bond and you finally feel 'I'm not alone!'
I like being a member of The Campath Club - makes me feel like we're an army trying our best to battle this demon which is trying to destroy us.
Let's hope our efforts are not in vain.
It happened to me yesterday.
I was working (yes it was a Sunday and yep I too think that working on a weekend should be banned!) and chatting (gossiping) to a colleague - let's call her Jemma - when someone who knew her but not me, came to join in the conversation.
Without giving too much away, the chap - let's call him Malcolm - who walked uninvited into our heady mix of laughter and intrigue is, to put it politely, a bit - well a bit more than a bit actually - of an odd ball. Highly intelligent, fantastic at his job but sadly lacking in any social niceties. And to put it bluntly, by stepping into the little tete-a-tete Jemma and I were enjoying, the laughter and gossip (which was highly interesting I might add) ceased rapidly.
And so the conversation turned into a work-mode one. You see there was a bit of a staffing crisis where someone had called in sick and I was attempting to drag some other poor soul into the office on a Sunday when all other right-minded people are enjoying a lie in with the Sunday papers and a big mug of coffee to stave off any remnants of wine/beer effects from the night before.
The discussion turned to the person - let's call him Joe - who had called in complaining of food poisoning. I confess Jemma and I both had suspicions this may not actually be the truth...
"Well," says Malcolm, "That's very unlike Joe to call in sick."
"Why do you say that?" I replied.
"Joe doesn't need to call in and pretend he is sick - he already has a fantastic excuse at hand. His trump card if you like."
My curiosity was piqued.
"Trump card?" I asked intrigued at what this fantastic excuse could be.
"Yes," said Malc. "His wife has MS or something equally degenerative so he doesn't need to pretend he's sick, he can just wheel out the excuse his wife is on the turn."
"...Oh... right," I heard myself say as I felt the crushing blow that I have MS hit me yet again. It was horrifying.
Neither the charmless Malc or the lovely Jemma know I also have MS and I certainly didn't intend to enlighten them.
But an uneventful day which had been rolling along pretty smoothly and one in which MS hadn't been on my mind at all suddenly came falling around me and I could feel myself analysing yet again the reasons why I have been unfortunate enough to be given this thing to deal with.
I'm trying to stop myself dwelling on this before I fall head first into that pit of despair which I have only recently managed to climb out of and wash myself off so I won't bore you any more with my mind-tripping reaction to Malcolm's seemingly innocuous comments.
So what else has been going on?
Well one thing that has absolutely delighted me is that I have been contacted by people via email who like me are in The Campath Club.
As I discussed with one of those emailers, it is like there is this secret underground movement of people who are about to / have had the Big A and when you finally make contact with one of them, no matter what other differences/similarities you have with them, there is this one huge bond and you finally feel 'I'm not alone!'
I like being a member of The Campath Club - makes me feel like we're an army trying our best to battle this demon which is trying to destroy us.
Let's hope our efforts are not in vain.
Friday, 6 July 2012
The Big A: Round two
It has been nearly eight months since I had my first dose of Alemtuzumab (Campath / Lemtrada) and overall it's been a success.
No real symptoms to speak of - a couple of aches and pains coupled with the odd tingle but overall I've been pretty well.
I could moan here about the endless fatigue that has plagued me but I won't because after a bit of a mini crisis last week where I was suddenly overwhelmed and found myself in a world of tears - where I was crying for no apparent reason... for days and days and days (and there was me thinking I had dealt with this thing emotionally.) I took stock and realised I've been overdoing things in an effort to prove to the world (but more to myself) that MS can't stop me. Oh what a silly girl I've been.
All that swollen red eyes and boxes of wasted tissues and for what? Well, actually for me to realise I need to slow down a bit. I need to do what I have to do in work and life but to stop overdoing things in order to prove to everyone that I'm not some kind of special case.
For the first time in quite a while, I'm starting to feel a bit 'normal' again. I've managed to regain some energy and I'm actually feeling positive for the first time in an age.
And now I am just four(ish) months away from my next dose of the Big A.
I recently saw my neurologist. It's been the first time since I had the treatment but we both discovered that actually I had missed two earlier appointments - one just a month after the first dose in December and one in April - and all due to the magic of disappearing mail.
It's a trick not even Paul Daniels can conjure up. Somewhere out there, just like the illusionist's doves are two appointment letters flying around. Only these two will never be pulled from a hat to reappear before a clapping and appreciative audience... tah dah! I've never liked magic tricks.
Anyway, he seemed pretty happy with my progress and shipped me off to get about 300 (ok about 10) blood samples for testing. He told me I'd be having another MRI before the treatment began - I'm assuming it's to compare and contrast to assess the progress of my MonSter and said my next dose would be over three days rather than five.
So being aware of the mystery of missing mail and with the hospital appointments telephone hotline now programmed into my phone, we're all set to go.
No real symptoms to speak of - a couple of aches and pains coupled with the odd tingle but overall I've been pretty well.
I could moan here about the endless fatigue that has plagued me but I won't because after a bit of a mini crisis last week where I was suddenly overwhelmed and found myself in a world of tears - where I was crying for no apparent reason... for days and days and days (and there was me thinking I had dealt with this thing emotionally.) I took stock and realised I've been overdoing things in an effort to prove to the world (but more to myself) that MS can't stop me. Oh what a silly girl I've been.
All that swollen red eyes and boxes of wasted tissues and for what? Well, actually for me to realise I need to slow down a bit. I need to do what I have to do in work and life but to stop overdoing things in order to prove to everyone that I'm not some kind of special case.
For the first time in quite a while, I'm starting to feel a bit 'normal' again. I've managed to regain some energy and I'm actually feeling positive for the first time in an age.
And now I am just four(ish) months away from my next dose of the Big A.
I recently saw my neurologist. It's been the first time since I had the treatment but we both discovered that actually I had missed two earlier appointments - one just a month after the first dose in December and one in April - and all due to the magic of disappearing mail.
It's a trick not even Paul Daniels can conjure up. Somewhere out there, just like the illusionist's doves are two appointment letters flying around. Only these two will never be pulled from a hat to reappear before a clapping and appreciative audience... tah dah! I've never liked magic tricks.
Anyway, he seemed pretty happy with my progress and shipped me off to get about 300 (ok about 10) blood samples for testing. He told me I'd be having another MRI before the treatment began - I'm assuming it's to compare and contrast to assess the progress of my MonSter and said my next dose would be over three days rather than five.
So being aware of the mystery of missing mail and with the hospital appointments telephone hotline now programmed into my phone, we're all set to go.
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