Once again I've neglected my blog but in the last few weeks I have had a lot of pantomime rehearsals (show starts a week today) and been given my job permanently so back to full time.
I'm currently meant to be getting ready for a party but instead I'm trawling the internet looking for what could be causing my latest issue. My fingers on my right hand are twisted, only from the top knuckle upwards, but so that the nail is virtually facing my little finger. I have no idea when this started but it's currently very noticeable and would probably explain all the pain I've been having in my fingers.
Parties aren't really my thing anyway. Due to the amount of medication I'm on I can't drink really so I'm designated driver, which I don't mind, but by 9pm everyone is drunk, I'm ready for bed and ALS is having a good time so I don't want to drag him away. Not my idea of fun at all. I've set myself a limit of 11pm. I have a 5-6 hour rehearsal tomorrow so I need to be in some sort of a fit state.
Ah well... off to the party I guess.
Saturday, 17 January 2015
Wednesday, 10 December 2014
It's been a while...
Apparently I'm not as dedicated to this blogging thing as I intended to be but it's just been so busy lately. In the last 3 months:-
1. ALS and I put an early deposit down on a new build house.
2. We have been trying to decorate every room of his current house (in the last 3 weeks)
3. I've been up and down with illness.
4. I've had more than a few mini breakdowns.
5. I've had my hours cut back to 4 days instead of 5 at work.
6. I've finally had an interview for my job (permanently) arranged which is next Thursday.
That's just a brief run down but believe me it's been hectic, not to mention preparations for Christmas. I have a blog post mostly written that I'll post in the next couple of days but I just thought I'd update where I've been and how things are going.
On the Ehlers-Danlos front I am more than sure that it's exactly what my problem is and have found a doctor who's swapped my medication around to focus more on the pain side of things rather than sleep. I've got an appointment next week to review things so we'll see how that goes - I'm hoping she'll send me to a Clinical Geneticist, especially if I explain we're looking to have children in the next few years and want to know the situation.
Wish me luck!
1. ALS and I put an early deposit down on a new build house.
2. We have been trying to decorate every room of his current house (in the last 3 weeks)
3. I've been up and down with illness.
4. I've had more than a few mini breakdowns.
5. I've had my hours cut back to 4 days instead of 5 at work.
6. I've finally had an interview for my job (permanently) arranged which is next Thursday.
That's just a brief run down but believe me it's been hectic, not to mention preparations for Christmas. I have a blog post mostly written that I'll post in the next couple of days but I just thought I'd update where I've been and how things are going.
On the Ehlers-Danlos front I am more than sure that it's exactly what my problem is and have found a doctor who's swapped my medication around to focus more on the pain side of things rather than sleep. I've got an appointment next week to review things so we'll see how that goes - I'm hoping she'll send me to a Clinical Geneticist, especially if I explain we're looking to have children in the next few years and want to know the situation.
Wish me luck!
Saturday, 13 September 2014
Brainwave!
Wow, it's been a while. This last month has just completely flown by. I've been really busy with my new job, getting pantomime rehearsals started (I got the part I wanted!) and just generally trying to keep on top of housework etc., not to mention trying to get started on wedding planning.
I'm thoroughly enjoying the new job and after a discussion with one of the consultants the other day I'm beginning to think I may have all the answers about what's wrong with me! When I was about 15 I was sent to see a Clinical Geneticist who mentioned that she suspected a diagnosis of Ehlers-Danlos (Type 3) Syndrome which is characterised by hypermobility, fragile skin, easy bruising, pain, neuropathy (which is what's going on with my pins and needles feeling in my hands) and, among other things, an insensitivity to local anaesthetics. This could explain a lot! I have all of these symptoms and if this is the problem then it's more easy to diagnose and, although again not curable, there's a lot more known about it so management should be easier. Going to get myself booked into the doctors next week and hopefully get some answers - seriously can't believe it never got mentioned again after the Clinical Geneticist told me to look into it. Just happens to be fortunate that I'm now working in a medical environment!
I know I did mention this in a previous post but I've always been kind of vague about the symptoms. The more I hear about it, the more I realise that this is actually the answer to all my problems!
I'm thoroughly enjoying the new job and after a discussion with one of the consultants the other day I'm beginning to think I may have all the answers about what's wrong with me! When I was about 15 I was sent to see a Clinical Geneticist who mentioned that she suspected a diagnosis of Ehlers-Danlos (Type 3) Syndrome which is characterised by hypermobility, fragile skin, easy bruising, pain, neuropathy (which is what's going on with my pins and needles feeling in my hands) and, among other things, an insensitivity to local anaesthetics. This could explain a lot! I have all of these symptoms and if this is the problem then it's more easy to diagnose and, although again not curable, there's a lot more known about it so management should be easier. Going to get myself booked into the doctors next week and hopefully get some answers - seriously can't believe it never got mentioned again after the Clinical Geneticist told me to look into it. Just happens to be fortunate that I'm now working in a medical environment!
I know I did mention this in a previous post but I've always been kind of vague about the symptoms. The more I hear about it, the more I realise that this is actually the answer to all my problems!
Sunday, 17 August 2014
Happy Times!
This week has been hectic but great...
I had my hospital appointment on Tuesday and was told that it's almost definitely not carpal tunnel syndrome. I saw the Consultant that I was meant to have seen in the beginning and he was far more helpful and looked at me as a whole instead of just the specific thing I'd been referred for. He's suggested that the problem may stem from my neck as I have a lot of pain there and it's probably just a trapped nerve or something so he's arranging an MRI for me and I'm back in six weeks for the results... fingers crossed I get some answers although I'm sure the test results will be 'normal'. Apparently there's definitely something wrong with me but nothing that tests will ever show up and nobody can figure it out.
I started my new job on Wednesday which (despite a few glitches in the system and me not having half the things I need to do my job thanks to poor management) is FAR more interesting than my last job already - and I've not even started the real work yet. I have a lovely team of people to work with and it's far better pay than before, plus I don't get time to pig out on junk food. It's also been a bonus not typing for the first few days - given my hands and neck a rest. Hopefully the enjoyment lasts as I can see it being a great job.
I also had a pantomime audition on Wednesday which I feel went quite well. I won't find out the outcome until 1st September but if I get it I've been warned the costume will be quite skimpy so a good incentive to keep myself in shape.
Other than that it's been a pretty standard week but I've felt pretty well, had some good gym sessions and enjoyed a fair amount of 'me-time' this weekend whilst ALS has been at work all weekend.
Now to get all my cleaning finished and get some food before ALS gets home!
I had my hospital appointment on Tuesday and was told that it's almost definitely not carpal tunnel syndrome. I saw the Consultant that I was meant to have seen in the beginning and he was far more helpful and looked at me as a whole instead of just the specific thing I'd been referred for. He's suggested that the problem may stem from my neck as I have a lot of pain there and it's probably just a trapped nerve or something so he's arranging an MRI for me and I'm back in six weeks for the results... fingers crossed I get some answers although I'm sure the test results will be 'normal'. Apparently there's definitely something wrong with me but nothing that tests will ever show up and nobody can figure it out.
I started my new job on Wednesday which (despite a few glitches in the system and me not having half the things I need to do my job thanks to poor management) is FAR more interesting than my last job already - and I've not even started the real work yet. I have a lovely team of people to work with and it's far better pay than before, plus I don't get time to pig out on junk food. It's also been a bonus not typing for the first few days - given my hands and neck a rest. Hopefully the enjoyment lasts as I can see it being a great job.
I also had a pantomime audition on Wednesday which I feel went quite well. I won't find out the outcome until 1st September but if I get it I've been warned the costume will be quite skimpy so a good incentive to keep myself in shape.
Other than that it's been a pretty standard week but I've felt pretty well, had some good gym sessions and enjoyed a fair amount of 'me-time' this weekend whilst ALS has been at work all weekend.
Now to get all my cleaning finished and get some food before ALS gets home!
Sunday, 10 August 2014
Good news everyone!
I've not updated for a while but it's been a very busy week or two. Firstly and probably most excitingly I have managed to get myself a new, better paid job which is far closer to home and a lot less monotonous than the one I already have - I start on Wednesday this week and I can't wait, I'm definitely ready for a new challenge. Plus, it's at our local hospital... what better place to work for someone with as many health problems as me haha!
ALS and I went to Leeds yesterday to watch Europe's Strongest Man for the second year running and had an amazing time, despite both getting incredibly sunburnt (the forecast said rain/cloud/storms all day) after being sat in direct sunlight for 8 hours plus. Definitely worth it though and we've learnt a valuable lesson about not paying attention to the weather forecast. I also got to sit next to a couple with the most adorable six month old baby who seemed to take quite a liking to me and his parents were very friendly too.
Feeling a bit slow today after driving four about 4 hours yesterday plus all the sitting in one spot and just a generally very long day but after a chilled out day today I'm sure I'll be right as rain tomorrow - think we're going to watch a movie and get a Chinese in!
I have my appointment on Tuesday to make the decision about my operation which I think I'm going to go for - it'll get in the way of my powerlifting training BUT it'll be worth it in the long run, rather than having to have it done later on when I'm wanting to compete (if I ever get there).
SO nice to have such a positive post for once - my health is still moderately failing me but I'm happy, ALS is happy and our lives are starting to come together nicely so that's what matters!
:)
ALS and I went to Leeds yesterday to watch Europe's Strongest Man for the second year running and had an amazing time, despite both getting incredibly sunburnt (the forecast said rain/cloud/storms all day) after being sat in direct sunlight for 8 hours plus. Definitely worth it though and we've learnt a valuable lesson about not paying attention to the weather forecast. I also got to sit next to a couple with the most adorable six month old baby who seemed to take quite a liking to me and his parents were very friendly too.
Feeling a bit slow today after driving four about 4 hours yesterday plus all the sitting in one spot and just a generally very long day but after a chilled out day today I'm sure I'll be right as rain tomorrow - think we're going to watch a movie and get a Chinese in!
I have my appointment on Tuesday to make the decision about my operation which I think I'm going to go for - it'll get in the way of my powerlifting training BUT it'll be worth it in the long run, rather than having to have it done later on when I'm wanting to compete (if I ever get there).
SO nice to have such a positive post for once - my health is still moderately failing me but I'm happy, ALS is happy and our lives are starting to come together nicely so that's what matters!
:)
Monday, 4 August 2014
Hypochondriac!
After last week's episode I got myself off to the doctor's on Wednesday and they booked me in for a spireometry test on Thursday to check if I have asthma and was told that I'd only need an appointment if there was anything wrong with the results.
I rang the doctor's this morning having not heard anything and they said they'd got a note on my file to make me an appointment so I booked in for this afternoon and spent the day worrying. When I finally got to see the doctor he told me, in no uncertain terms, that I'm fine. He said they'd ruled out emphysema, bronchitis, COPD etc. (I'm pretty sure I'd be in a FAR worse state if I had any of those) and that I just had a bit of an occasional wheeze and to keep taking my inhaler as needed. He then insinuated that they were panic attacks (and is the third person to do so). I appreciate they have to cover all bases but I know they aren't panic attacks seeing as they have happened at times when I'm very chilled out and not worrying about anything. I don't feel panicked at the time and so far they've only happened when relaxing. I was so frustrated I didn't even ask about asthma.
I'm beginning to wonder if maybe it is all in my head and I imagine all these symptoms and I'm actually fine. I know this isn't the case having spent hours in A&E on oxygen and steroids etc. but it just feels like I never seem to get anything that can be easily tested for. When I was waiting to be diagnosed with the fibromyalgia a lot of people (medical and otherwise) implied it was all in my head or that it was a mental problem and even to this day there are still people who are convinced I'm just whining about nothing. Even doctors question who diagnosed me, when, how... it just makes me feel like a fraud.
Don't get me wrong, it's great news hearing that it's nothing serious and that I'm 'fine', I just wish I actually felt it...
I rang the doctor's this morning having not heard anything and they said they'd got a note on my file to make me an appointment so I booked in for this afternoon and spent the day worrying. When I finally got to see the doctor he told me, in no uncertain terms, that I'm fine. He said they'd ruled out emphysema, bronchitis, COPD etc. (I'm pretty sure I'd be in a FAR worse state if I had any of those) and that I just had a bit of an occasional wheeze and to keep taking my inhaler as needed. He then insinuated that they were panic attacks (and is the third person to do so). I appreciate they have to cover all bases but I know they aren't panic attacks seeing as they have happened at times when I'm very chilled out and not worrying about anything. I don't feel panicked at the time and so far they've only happened when relaxing. I was so frustrated I didn't even ask about asthma.
I'm beginning to wonder if maybe it is all in my head and I imagine all these symptoms and I'm actually fine. I know this isn't the case having spent hours in A&E on oxygen and steroids etc. but it just feels like I never seem to get anything that can be easily tested for. When I was waiting to be diagnosed with the fibromyalgia a lot of people (medical and otherwise) implied it was all in my head or that it was a mental problem and even to this day there are still people who are convinced I'm just whining about nothing. Even doctors question who diagnosed me, when, how... it just makes me feel like a fraud.
Don't get me wrong, it's great news hearing that it's nothing serious and that I'm 'fine', I just wish I actually felt it...
Thursday, 31 July 2014
Asthma?
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!
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!
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