So, Sunday night resulted in another trip to A&E at around midnight. I'd been busy cleaning all day, got in bed just after 11pm and started coughing, weezing and generally struggling to breathe. I got up, wandered around, got some fresh air, had my inhaler, drank lots of water but nothing was helping so about an hour later ALS decided it was time to take me to A&E (which took a bit of persuading as I wanted to sleep instead).
Fortunately this time they took me straight through and put me in the Majors Unit (I wasn't that bad but hey, it got me seen quickly). Within twenty minutes I had been given oxygen, had blood taken etc. and by 1am I was feeling a lot better. Unfortunately, because I was in the Majors Unit there were a lot of people far more ill than me who needed the doctor's attention so it took a further three hours for a doctor to come and discharge me! We went on a 4am McDonalds trip (I was tired and hungry), got in bed about 5am and poor ALS had to be at work at 7! I, on the other hand, was told to call in sick and have a day of bed rest which I did, mostly.
At the request of A&E I made an appointment to see my GP yesterday who booked me in to see the practice nurse today for a spireometry test (you breathe into a tube repeatedly and apparently it'll diagnose asthma in most cases). So now I just have to wait for a phone call letting me know the results. Part of me is hoping it is ashtma because then I'll at least have an answer and know how to deal with it but on the other hand it's never nice to be diagnosed with yet another new condition! On the bright side, they're pretty sure it's nothing more serious.
Knowing my doctor's surgery it'll be well into next week before I hear anything (they're good but VERY slow) so just trying to keep myself busy for the time being and taking my inhaler as needed. The inhaler itself has done a very good job at stopping the weezing, by the time I got to hospital on Sunday there was no weezing, just a lot of tightness, which is a good sign. Zumba also apparently helped on Tuesday! I started weezing a few minutes in, kept going and by the end I was fine - couple of puffs of the inhaler and no issues since - I vote that next time I'm struggling we find a Zumba class instead of A&E!
On a slightly happier note, we had our mini, unofficial engagement party with Ant's family and just a few friends on Saturday night which was lovely. We had a BBQ and drinks, followed by a couple of hours playing Scene It at his step-brother and his girlfriend's house - rather adult party considering we're all still young but I guess we have to grow up sometime and being so limited by my health I'm not exactly suited to wild nights out anyway! Either way it was a lovely night and we had some beautiful cards and gifts so we're both feeling good at the moment.
I'm not seeing ALS much at the moment at I'm working 8-4 (as always) this week and he's on lates so working 3-10:30. It'll be far better next week when he's on 7-3:30 and we're going to do something nice on Saturday so we actually get to spend some time together rather than just pottering around the house!
Thursday, 31 July 2014
Friday, 25 July 2014
CFS FM EDS...
If I put all these letters after my name they'd make me sound incredibly clever to the untrained mind... but they're actually just some of the things stopping me from having real letters after my name!
My health is probably going to be a big topic in these blog posts as it's one of the main factors in our journey to have a family so I'll give you a brief overview:
I was never the healthiest child but I only ever had coughs and colds etc. perfectly normal childhood illnesses. Around March 2009 (when I was 16) I had a throat infection which caused severe vertigo and put me off my feet for a couple of weeks and following that I started getting ill a lot, nothing really specific just feeling under the weather all the time. I saw numerous doctors, specialists, consultants and had test after test but nobody could diagnose tell me what was wrong with me. A few months previous to this I'd got to know one of my mum's friends who has fibromyalgia and the more time I spent with her, the more she pointed out that my symptoms were very similar to hers so I mentioned this to a doctor but I was essentially told it doesn't exist and the doctors lost interest in even bothering to find out what was wrong with me.
Fast foward to the beginning of 2010 and, having exhausted all our other options, my grandparents paid for me to see a private consultant who had (within about ten minutes) examined me, spoken to me about the past year and given me an answer. I was so relieved to know what was wrong with me and that it was nothing serious that I didn't even consider the implications of what he was telling me. The prognosis was:
Fibromyalgia/Chronic Fatigue Syndrome - These two cross over each other quite a lot and whilst both cause pain and fatigue, they stem from different things and have slightly different symptoms. The overlap however means one exaggerates the other.
Ehler's Danlos Syndrome - I only have this in a very mild state but it basically explains my unnaturally soft skin, easy bruising and inability to heal even the tiniest of cuts - also my body's non-reaction to local anaesthetic which has caused issues on more than one occasion! This has never been confirmed as such, so who knows!
It was also mentioned at that time that due to high testosterone levels, slightly excessive body hair growth and unusually heavy periods I may have Polycystic Ovary Syndrome (I did have a scan for this later on but it was inconclusive and there's little else in the way of tests). I'd had a conversation with a doctor about this when I was around 13 and his immediate response was "Well you might have it and may not be able to conceive but that's not something to worry about now," in a very brusque tone. Whilst he may not have thought so, despite being so young, I certainly did. I've always wanted a family and this played on my mind for quite some time. Either way, I still have no official diagnosis but it's a factor to consider when we decide we'd like to have children.
Over the years I've tried various medications (none of which have worked in the slightest so I am now medication free), physiotherapy and other methods, some of which have helped, but my conditions are not about 'treating and curing'. They are about learning to cope and manage symptoms, which I feel I do quite well most of the time. I've built myself up to quite a rigourous exercise regime (at least that way when I ache all the time I have a good reason and it doesn't get to me), I try and eat healthily and I limit my activities around the things I need to get done.
I've suffered with mild depression on and off over the years but usually a few months of medication and I feel well enough to be med-free again and stay that way for months or years at a time.
This year, I have been diagnosed with Carpal Tunnel Syndrome which is where a nerve in your wrist is under too much pressure causing pain, numbness and tingling in the hands. Although present in both hands it is only particularly bad in my right one and I've been given the option of surgery which I have an appointment to discuss on August 12th. It's not bad enough yet for them to recommend surgery but because of the Fibromyalgia, the symptoms are exacerbated and they told me I could opt to have the operation (a relatively simple procedure) considering steroid injections, wrist splints and other methods have failed. I'm not quite decided but I think I'll probably go ahead with it.
On my birthday this year (last week) I was sent to A&E for a few hours with breathlessness... some oxygen, steroid injections and tests later I felt much better and they decided it was either an asthma attack or an allergic reaction. I've never had asthma but this is happening more and more often (although never previously bad enough to seek medical treatment) so that may well be another one to add to the list but we're seeing how it goes. I have an inhaler now so hopefully, even if it starts to happen again, a couple of puffs and I'll be right as rain.
On a good day you'll often hear me say that my health could be a lot worse and I cope perfectly fine. On a bad day you'll hear me complain that I no longer remember what it's like to not be in pain or not be tired. Pain and fatigue has been my daily state of play for over five years now and I've accepted it will only get worse with age BUT I refuse to let it control me and get in the way of the things I want to do.
I have an amazingly supportive partner who is by my side through thick and thin and has accompanied me to countless doctors and hospital appointments and I know for a fact that he makes everything ten times easier to deal with.
Wow... when I see it written down it seems a lot worse than I remember! I know it's a lot to take in but I thought I'd use this post for reference as it's going to come up a lot so I may as well use it as a starting point so it's clear what I'm going on about!
Anyway I think I've said sufficient for now - what a depressing post! I promise it'll get better!
My health is probably going to be a big topic in these blog posts as it's one of the main factors in our journey to have a family so I'll give you a brief overview:
I was never the healthiest child but I only ever had coughs and colds etc. perfectly normal childhood illnesses. Around March 2009 (when I was 16) I had a throat infection which caused severe vertigo and put me off my feet for a couple of weeks and following that I started getting ill a lot, nothing really specific just feeling under the weather all the time. I saw numerous doctors, specialists, consultants and had test after test but nobody could diagnose tell me what was wrong with me. A few months previous to this I'd got to know one of my mum's friends who has fibromyalgia and the more time I spent with her, the more she pointed out that my symptoms were very similar to hers so I mentioned this to a doctor but I was essentially told it doesn't exist and the doctors lost interest in even bothering to find out what was wrong with me.
Fast foward to the beginning of 2010 and, having exhausted all our other options, my grandparents paid for me to see a private consultant who had (within about ten minutes) examined me, spoken to me about the past year and given me an answer. I was so relieved to know what was wrong with me and that it was nothing serious that I didn't even consider the implications of what he was telling me. The prognosis was:
Fibromyalgia/Chronic Fatigue Syndrome - These two cross over each other quite a lot and whilst both cause pain and fatigue, they stem from different things and have slightly different symptoms. The overlap however means one exaggerates the other.
Ehler's Danlos Syndrome - I only have this in a very mild state but it basically explains my unnaturally soft skin, easy bruising and inability to heal even the tiniest of cuts - also my body's non-reaction to local anaesthetic which has caused issues on more than one occasion! This has never been confirmed as such, so who knows!
It was also mentioned at that time that due to high testosterone levels, slightly excessive body hair growth and unusually heavy periods I may have Polycystic Ovary Syndrome (I did have a scan for this later on but it was inconclusive and there's little else in the way of tests). I'd had a conversation with a doctor about this when I was around 13 and his immediate response was "Well you might have it and may not be able to conceive but that's not something to worry about now," in a very brusque tone. Whilst he may not have thought so, despite being so young, I certainly did. I've always wanted a family and this played on my mind for quite some time. Either way, I still have no official diagnosis but it's a factor to consider when we decide we'd like to have children.
Over the years I've tried various medications (none of which have worked in the slightest so I am now medication free), physiotherapy and other methods, some of which have helped, but my conditions are not about 'treating and curing'. They are about learning to cope and manage symptoms, which I feel I do quite well most of the time. I've built myself up to quite a rigourous exercise regime (at least that way when I ache all the time I have a good reason and it doesn't get to me), I try and eat healthily and I limit my activities around the things I need to get done.
I've suffered with mild depression on and off over the years but usually a few months of medication and I feel well enough to be med-free again and stay that way for months or years at a time.
This year, I have been diagnosed with Carpal Tunnel Syndrome which is where a nerve in your wrist is under too much pressure causing pain, numbness and tingling in the hands. Although present in both hands it is only particularly bad in my right one and I've been given the option of surgery which I have an appointment to discuss on August 12th. It's not bad enough yet for them to recommend surgery but because of the Fibromyalgia, the symptoms are exacerbated and they told me I could opt to have the operation (a relatively simple procedure) considering steroid injections, wrist splints and other methods have failed. I'm not quite decided but I think I'll probably go ahead with it.
On my birthday this year (last week) I was sent to A&E for a few hours with breathlessness... some oxygen, steroid injections and tests later I felt much better and they decided it was either an asthma attack or an allergic reaction. I've never had asthma but this is happening more and more often (although never previously bad enough to seek medical treatment) so that may well be another one to add to the list but we're seeing how it goes. I have an inhaler now so hopefully, even if it starts to happen again, a couple of puffs and I'll be right as rain.
On a good day you'll often hear me say that my health could be a lot worse and I cope perfectly fine. On a bad day you'll hear me complain that I no longer remember what it's like to not be in pain or not be tired. Pain and fatigue has been my daily state of play for over five years now and I've accepted it will only get worse with age BUT I refuse to let it control me and get in the way of the things I want to do.
I have an amazingly supportive partner who is by my side through thick and thin and has accompanied me to countless doctors and hospital appointments and I know for a fact that he makes everything ten times easier to deal with.
Wow... when I see it written down it seems a lot worse than I remember! I know it's a lot to take in but I thought I'd use this post for reference as it's going to come up a lot so I may as well use it as a starting point so it's clear what I'm going on about!
Anyway I think I've said sufficient for now - what a depressing post! I promise it'll get better!
Friday, 18 July 2014
Introductions...
I'm going to be honest here, I have no idea where to start with this but as it's a personal blog that I don't really expect anybody to read, I'm not too concerned. Anyone who knows me knows that I'm a bit anal and have a touch of OCD so we'll start with a few lists...
Five Random Facts About Me
1. I absolutely adore animals - I'd have a zoo if I could afford it.
2. If I had to describe myself as a TV character, I'd be Monica from Friends, easily.
3. I love going to the gym - I'm training to powerlift and nothing is going to get in my way.
4. I'm a proper nerd at heart; movies, gaming, books, anything that I can lose myself in!
5. As you can probably tell, I love lists. I use them for everything.
Four Issues This Blog Will Revolve Around
1. Starting a family.
2. The HD gene.
3. Fibromyalgia (and other health issues).
4. Relationship with ALS.
Three Reasons I Started This Blog
1. To enable me to get my own head straight, enable me to get things out and understand the things that are going on in my life.
2. To create a record for myself to look back on, in both good times and bad.
3. To document the incredible life journey that I'm attempting to take in the next few years.
Two Things That Inspired Me To Write
1. http://survivinghuntingtons.blogspot.co.uk/ - Angela F is amazing. This blog has made me laugh and cry on more than one occasion.
2. ALS - my one, my only, the one person who I need to stay strong for.
One Lifelong Dream
1. To be a mother.
So that's me... it surprised me how hard it was writing this post, just thinking of things to put. I've been meaning to start a blog for ages but never got round to it and now I feel like I have so much to say that I don't know where to start.
I'll leave it there for now though I think!
Five Random Facts About Me
1. I absolutely adore animals - I'd have a zoo if I could afford it.
2. If I had to describe myself as a TV character, I'd be Monica from Friends, easily.
3. I love going to the gym - I'm training to powerlift and nothing is going to get in my way.
4. I'm a proper nerd at heart; movies, gaming, books, anything that I can lose myself in!
5. As you can probably tell, I love lists. I use them for everything.
Four Issues This Blog Will Revolve Around
1. Starting a family.
2. The HD gene.
3. Fibromyalgia (and other health issues).
4. Relationship with ALS.
Three Reasons I Started This Blog
1. To enable me to get my own head straight, enable me to get things out and understand the things that are going on in my life.
2. To create a record for myself to look back on, in both good times and bad.
3. To document the incredible life journey that I'm attempting to take in the next few years.
Two Things That Inspired Me To Write
1. http://survivinghuntingtons.blogspot.co.uk/ - Angela F is amazing. This blog has made me laugh and cry on more than one occasion.
2. ALS - my one, my only, the one person who I need to stay strong for.
One Lifelong Dream
1. To be a mother.
So that's me... it surprised me how hard it was writing this post, just thinking of things to put. I've been meaning to start a blog for ages but never got round to it and now I feel like I have so much to say that I don't know where to start.
I'll leave it there for now though I think!
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