This will be a very brief post as typing is very difficult with one hand.... yesterday I fell downstairs, was holding on to a high banister/ railing that goes along the top of the stairs, slipped and gripped to try to save myself and totally wrenched my shoulder. When I landed, on my bum 2 stairs down, my arm was stuck in the air and my mum had to lower it for me. In short I have a suspected torn rotator cuff, an MRI appointment tomorrow, orthopaedic appointment on Monday and am really really hoping it's not going to need surgery. The pain is very bad and had me squealing and crying with any movement earlier tonight. The timing is awful - I fly home a week on Sunday, I have lots to do - none of which is getting done at the moment as I really need the use of both arms for most things...And sitting in the car in a small space and going over bumps was dreadful today; the thought of a transatlantic flight is not a pleasant one. So I am hoping for some sort of miracle and speedy recovery over the next few days otherwise I have no idea what my plan is.
And, of course, Lyme-wise I'm feeling a bit better again, typical! New antibiotics really seem to be helping and I am feeling as if I'm on an upward slope again at the moment. I really do think the universe hates me.... can't it all just be good for a while?!
Thursday, June 23, 2011
Friday, June 10, 2011
New Antibiotics... third time lucky?
Yesterday I started my third - and hopefully final - type of antibiotic. I am now taking azithromycin, a newer drug related to the one I have just stopped. This one is stronger and has more bio-availability (see the things you have to learn and understand when your Mum's a pharmacist and goes to Dr appointments with you... I'd rather learn it than sit in the appointment and have everything pass over my head... although it still does that sometimes!) Anyway... basically that means I get the same, or better, abx action from only one dose a day. This is very pleasing to me - no more eating at midnight and 6am... just one tablet, at dinnertime. Easy. So hopefully that will really help my stomach and prevent it getting irritated again. The newer drug has fewer gastrointestinal side effects too so that should all help.
So I started taking it yesterday and then last night my legs got sore and I started feeling sick again. Reactions I have experienced on abx and herbal abx and I associate with herx reactions. Today I felt sick most of the day, managed to go out with the use of anti-nausea tablets but eating, even when I felt hungry, made me feel nauseous again. I hope this is just a temporary thing... I have finally got my weight at a number I am happy with. I really don't want to lose more weight again because I can't eat.... I am 18 pounds heavier than I was a year ago and my size 0 clothes are all fitting me very nicely right now!
There was a bit of a debate over whether or not I should go back on abx now. If I wasn't planning to go home in the summer and go back to uni it is likely I would have waited another couple of months as my Dr suggested, although he realises my circumstances are a little unusual. I decided I would much rather make sure I'm as well as I can be when I start my PhD in September rather than messing about with abx again then. He understands this and is happy for me to do that just now and then we will re-evaluate when I see him again when I come over to visit my parents at xmas.
So now that I seem to be having herx-type reactions again I feel quite glad that I have started them because the fear is always that if the Lyme infection is still there, it will gain strength and some work will have to be repeated to get rid of it. I was afraid waiting another couple of months might take me back too many steps again so in a way the herx reactions make me think this is the right decision - that the abx are getting to work right away and there is (unfortunately) stuff for them to do. There is really no way to know though.... so frustrating.
Anyway, I also have new sleeping tablets and they seem to be working. It is just before 1am and I can feel myself dropping off, so I'm going to take advantage of that! Hope I get a good night's sleep!
"To sleep, perchance to dream....."
So I started taking it yesterday and then last night my legs got sore and I started feeling sick again. Reactions I have experienced on abx and herbal abx and I associate with herx reactions. Today I felt sick most of the day, managed to go out with the use of anti-nausea tablets but eating, even when I felt hungry, made me feel nauseous again. I hope this is just a temporary thing... I have finally got my weight at a number I am happy with. I really don't want to lose more weight again because I can't eat.... I am 18 pounds heavier than I was a year ago and my size 0 clothes are all fitting me very nicely right now!
There was a bit of a debate over whether or not I should go back on abx now. If I wasn't planning to go home in the summer and go back to uni it is likely I would have waited another couple of months as my Dr suggested, although he realises my circumstances are a little unusual. I decided I would much rather make sure I'm as well as I can be when I start my PhD in September rather than messing about with abx again then. He understands this and is happy for me to do that just now and then we will re-evaluate when I see him again when I come over to visit my parents at xmas.
So now that I seem to be having herx-type reactions again I feel quite glad that I have started them because the fear is always that if the Lyme infection is still there, it will gain strength and some work will have to be repeated to get rid of it. I was afraid waiting another couple of months might take me back too many steps again so in a way the herx reactions make me think this is the right decision - that the abx are getting to work right away and there is (unfortunately) stuff for them to do. There is really no way to know though.... so frustrating.
Anyway, I also have new sleeping tablets and they seem to be working. It is just before 1am and I can feel myself dropping off, so I'm going to take advantage of that! Hope I get a good night's sleep!
"To sleep, perchance to dream....."
Saturday, June 4, 2011
Fix you
After Mark (markintheparkblogs) commented on one of my previous posts I had a look on his blog. I am always interested in other people's stories, especially Lyme-related ones, but also ones that refer to other "invisible illnesses". I think there is a lot of comfort in finding other people who have similar experiences and I especially like reading about people who are winning their own personal battles - nothing like a little motivation and inspiration.
In one of Mark's blog posts he talks about awareness (not of Lyme) and has posted a video of Coldplay's "Fix you" to illustrate his point. This is a highly emotional song and I had not paid such close attention to the lyrics before, but they rang so true with me in so many ways. I have heard the song before though and remembered it was used in a particularly emotional (read: me bawling at the TV) dance on So You Think You Can Dance last year. The video is here:
There is a fuller excerpt from the TV show here but I couldn't seem to find that video to insert.
The lyrics can be seen here:
I think the song and the lyrics really capture the frustration of feeling like you would like to be able to do something but you can't. Whether it is fixing yourself, or someone else, or knowing that there are people who would like to be able to fix you, the song seems to speak to everyone.
And watching the SYTYCD video just makes me excited for the new season. I watched the first episode a few days ago....... the auditions are definitely NOT my favourite part of the show but it means the good bit will be here soon. And while I wait for that I can enjoy some highlights of past seasons on YouTube.
Some of my very favourite performances:
And leaving it on a cheerful note:
Can't wait until I can dance like that again!
In one of Mark's blog posts he talks about awareness (not of Lyme) and has posted a video of Coldplay's "Fix you" to illustrate his point. This is a highly emotional song and I had not paid such close attention to the lyrics before, but they rang so true with me in so many ways. I have heard the song before though and remembered it was used in a particularly emotional (read: me bawling at the TV) dance on So You Think You Can Dance last year. The video is here:
There is a fuller excerpt from the TV show here but I couldn't seem to find that video to insert.
The lyrics can be seen here:
I think the song and the lyrics really capture the frustration of feeling like you would like to be able to do something but you can't. Whether it is fixing yourself, or someone else, or knowing that there are people who would like to be able to fix you, the song seems to speak to everyone.
And watching the SYTYCD video just makes me excited for the new season. I watched the first episode a few days ago....... the auditions are definitely NOT my favourite part of the show but it means the good bit will be here soon. And while I wait for that I can enjoy some highlights of past seasons on YouTube.
Some of my very favourite performances:
And leaving it on a cheerful note:
Can't wait until I can dance like that again!
Friday, May 27, 2011
Project overload
I am not really very good at blogging... I keep forgetting to do it. And then I'm never really sure what to talk about when I click "new post"... which is unusual for me!
This week has really been about two things: crafting and sleeping, or lack of sleeping actually.
I have started multiple craft projects which I intend to finish before I go home to Scotland - a quilt, many cushion covers, pillow cases (to match the quilt), handmade cards, multiple jewellery projects, my gardening... and I'm sure I have a few more on my list as well. I think I may have been a little over-ambitious although I am making progress.
My main obstacle is actually my complete and total inability to use a sewing machine - although I am improving each day. However I have not gone back to it since it attacked my finger a couple of days ago... that was momentarily terrifying as I felt a pain in my finger, instinctively shut my eyes, took my foot off the pedal and pulled my hand away before tentatively opening my eyes to view the carnage. Thankfully there wasn't really any carnage - and more thankfully no blood all over my nice new quilt! - the damage seemed to have been contained inside the lovely blood blister that had formed, decorated by a nice purple bruise. It was definitely sorer than it looks. I'm really sure the machine hates me.
All of last week I was tortured by insomnia. After putting my light out around midnight each night I tossed and turned for several hours, feeling so tired and wanting nothing more than to fall into a deep sleep but it just didn't happen (despite trying every sleeping tablet/ herb - and combination - that I could think of). It was at least 7am several nights (/ mornings) in a row before I managed to fall asleep. I kept thinking I should just get up at 7am but I was SO tired, and I did manage to sleep for several hours after that. It's easy to think then that was messing up my sleeping pattern, but after sleeping until about 2pm, it would get to 9pm and I was just SO tired again so every night I thought, I have to sleep tonight.
It just didn't happen, so on Saturday night I stayed up all night. Fuelled by several cups of coffee I stayed up and worked on craft projects all night (I avoided the sewing machine, sleepiness and that machine would definitely be a disaster). The hardest part was actually staying awake all day Sunday, but I (barely) managed and was asleep by 8.30pm Sunday night. I slept until 4am and then - still feeling tired - tossed and turned for several hours before falling asleep again around 8am for a few hours. I still didn't really feel rested when I woke. Then the next night it was 1am, then 2am, last night 3am and I am really hoping I fall asleep before that tonight (it's already almost 1am).
My body clock seems to be on a totally different time zone. My doctor reckons somewhere in Alaska. I do kind of wonder if I went there, would it stay on its current time zone, or mess me up even more?!
Ultimately, I think this is all connected to the fact I have been off the antibiotics for a month. My stomach is feeling much better, but I think the optimistic idea that perhaps I would be finished with the antibiotics for good was a little, well, optimistic.
I do feel this month has been kind of horrendous. I think the insomnia has really exacerbated everything, but my energy levels have been quite low again and lots of aches and pains and odd sensations are back. In one way I'm just really annoyed, I can't believe I can just drop this quickly with no antibiotics... however, the good thing is that I have now tried to stop them while I am here, with my Lyme doctor close by and that it is easy to start them up again (and hopefully easy to get back to where I was a few weeks ago as well). It would have been much worse to be dealing with this when I am back home and have far more to be dealing with then.
Fingers crossed the next few weeks see some massive re-improvement.
This week has really been about two things: crafting and sleeping, or lack of sleeping actually.
I have started multiple craft projects which I intend to finish before I go home to Scotland - a quilt, many cushion covers, pillow cases (to match the quilt), handmade cards, multiple jewellery projects, my gardening... and I'm sure I have a few more on my list as well. I think I may have been a little over-ambitious although I am making progress.
My main obstacle is actually my complete and total inability to use a sewing machine - although I am improving each day. However I have not gone back to it since it attacked my finger a couple of days ago... that was momentarily terrifying as I felt a pain in my finger, instinctively shut my eyes, took my foot off the pedal and pulled my hand away before tentatively opening my eyes to view the carnage. Thankfully there wasn't really any carnage - and more thankfully no blood all over my nice new quilt! - the damage seemed to have been contained inside the lovely blood blister that had formed, decorated by a nice purple bruise. It was definitely sorer than it looks. I'm really sure the machine hates me.
All of last week I was tortured by insomnia. After putting my light out around midnight each night I tossed and turned for several hours, feeling so tired and wanting nothing more than to fall into a deep sleep but it just didn't happen (despite trying every sleeping tablet/ herb - and combination - that I could think of). It was at least 7am several nights (/ mornings) in a row before I managed to fall asleep. I kept thinking I should just get up at 7am but I was SO tired, and I did manage to sleep for several hours after that. It's easy to think then that was messing up my sleeping pattern, but after sleeping until about 2pm, it would get to 9pm and I was just SO tired again so every night I thought, I have to sleep tonight.
It just didn't happen, so on Saturday night I stayed up all night. Fuelled by several cups of coffee I stayed up and worked on craft projects all night (I avoided the sewing machine, sleepiness and that machine would definitely be a disaster). The hardest part was actually staying awake all day Sunday, but I (barely) managed and was asleep by 8.30pm Sunday night. I slept until 4am and then - still feeling tired - tossed and turned for several hours before falling asleep again around 8am for a few hours. I still didn't really feel rested when I woke. Then the next night it was 1am, then 2am, last night 3am and I am really hoping I fall asleep before that tonight (it's already almost 1am).
My body clock seems to be on a totally different time zone. My doctor reckons somewhere in Alaska. I do kind of wonder if I went there, would it stay on its current time zone, or mess me up even more?!
Ultimately, I think this is all connected to the fact I have been off the antibiotics for a month. My stomach is feeling much better, but I think the optimistic idea that perhaps I would be finished with the antibiotics for good was a little, well, optimistic.
I do feel this month has been kind of horrendous. I think the insomnia has really exacerbated everything, but my energy levels have been quite low again and lots of aches and pains and odd sensations are back. In one way I'm just really annoyed, I can't believe I can just drop this quickly with no antibiotics... however, the good thing is that I have now tried to stop them while I am here, with my Lyme doctor close by and that it is easy to start them up again (and hopefully easy to get back to where I was a few weeks ago as well). It would have been much worse to be dealing with this when I am back home and have far more to be dealing with then.
Fingers crossed the next few weeks see some massive re-improvement.
Wednesday, May 18, 2011
An ongoing battle
A couple of weeks ago my stomach started objecting to my antibiotics again and I have had to take a month off - lots of good tummy supplements and probiotics and it is feeling much better already. I am a little disheartened by the reappearance of some older symptoms and also seemingly unbeatable insomnia (it is currently 4.25am). My sleep - when I manage to scrape a few hours - feels unrefreshing again and during the day I am so tired. I head to bed early, thinking surely I will sleep tonight and then.... here I am sitting typing this at 4.26am.
I see my Dr again at the end of the month and I do know that this is another blip in my long journey and that I will get over it and things will improve again but it just feels like such an ongoing battle at the moment. Dealing with a bad week after feeling so much better is very difficult for me. I have to reel in my thoughts before they run away from me. Sometimes keeping myself from getting carried away with worst-case scenarios seems as difficult as dealing with the healing process itself.
But, thinking rationally, I know that my journey has been more of a rollercoaster and dealing with the bad bits is a part of it. The improvements will come again, and each time they are (usually) better. And on the optimistic side, my bad weeks now are nothing like they were a few years ago, although it will be good when there are no bad weeks at all.... but really, does anyone get that?!
Thinking philosophically leads me to some appropriate quotes:
It is a rough road that leads to the heights of greatness
- Seneca
To get through the hardest journey we need take only one step at a time, but we must keep on stepping
- Chinese Proverb
And I think perhaps my mantra for life:
Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning
- Albert Einstein
I see my Dr again at the end of the month and I do know that this is another blip in my long journey and that I will get over it and things will improve again but it just feels like such an ongoing battle at the moment. Dealing with a bad week after feeling so much better is very difficult for me. I have to reel in my thoughts before they run away from me. Sometimes keeping myself from getting carried away with worst-case scenarios seems as difficult as dealing with the healing process itself.
But, thinking rationally, I know that my journey has been more of a rollercoaster and dealing with the bad bits is a part of it. The improvements will come again, and each time they are (usually) better. And on the optimistic side, my bad weeks now are nothing like they were a few years ago, although it will be good when there are no bad weeks at all.... but really, does anyone get that?!
Thinking philosophically leads me to some appropriate quotes:
It is a rough road that leads to the heights of greatness
- Seneca
To get through the hardest journey we need take only one step at a time, but we must keep on stepping
- Chinese Proverb
And I think perhaps my mantra for life:
Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning
- Albert Einstein
Monday, May 16, 2011
A reassuring article
I have just read an article on the Telegraph's website: Deadly Lyme disease on increase
While the topic is not in any way reassuring, the article itself is the most factual, accurate article I have read on Lyme in the mainstream British media. The comments under the article suggest there is a need for more, similar articles which share information about Lyme disease in the UK.
When I first got ill and had no idea what was wrong with me I searched online through lots of information and do not remember coming across Lyme and certainly didn't consider it as a possibility. (If I did come across it, I probably discounted it on the basis that I didn't have the bullseye rash, often wrongly reported as a necessary symptom for diagnosis.) I really do think that I would come across a lot more information on Lyme disease now than I did six years ago.
However, I would really like to see more articles like this one but I really want to share this article and hope many other people do too.
While the topic is not in any way reassuring, the article itself is the most factual, accurate article I have read on Lyme in the mainstream British media. The comments under the article suggest there is a need for more, similar articles which share information about Lyme disease in the UK.
When I first got ill and had no idea what was wrong with me I searched online through lots of information and do not remember coming across Lyme and certainly didn't consider it as a possibility. (If I did come across it, I probably discounted it on the basis that I didn't have the bullseye rash, often wrongly reported as a necessary symptom for diagnosis.) I really do think that I would come across a lot more information on Lyme disease now than I did six years ago.
However, I would really like to see more articles like this one but I really want to share this article and hope many other people do too.
Thursday, April 14, 2011
Tick Awareness Week
This week (from April 11th) is "tick awareness week". BADA UK - Borreliosis and Associated Diseases Association - is a fantastic charity that works really hard to spread awareness of ticks, tick awareness and prevention, and awareness of tick-borne diseases, including Lyme disease. All week they have been posting articles on their facebook page of people sharing their Lyme disease stories.
Lots of info can be found at these sites:
BADA UK
Tick Bite Prevention Week
An overview of Lyme disease in the UK and Ireland
Lyme Disease Action UK (FAQ)
Spreading awareness of Lyme disease is really important as the disease seems to be on the increase in the UK and awareness is very low. When I say I have Lyme disease, most people do not know anything about it. Because the symptoms can be so varied, Lyme is often misdiagnosed. It is common for Lyme to be misdiagnosed as CFS, like in my case, so the more people are aware of Lyme disease, the higher the chance of treating the illness quickly and efficiently instead of in its later stages when it is much more difficult to treat.
This American study found that 88% of "CFS" patients treated with antibiotics experienced some improvement.
Lyme misdiagnosed as CFS - USA study
This is a huge deal. CFS is so debilitating, has no known treatment, and some people are severely disabled and unable to work or lead any kind of normal life. Antibiotics are not expensive drugs. A simple antibiotic could make so much difference to so many people. Some doctors seem to be against using antibiotics long-term due to the risk of side effects, but in this case the benefits clearly outweigh any negative side effects. Antibiotics are given long-term for acne, so I do not see any reason why they should not be tried in these cases. I know they have made such a huge difference to me - they really have given me my life back.
If you are reading this, please tell someone else about Lyme disease. Increasing awareness may help prevent someone from becoming really ill.
Lots of info can be found at these sites:
BADA UK
Tick Bite Prevention Week
An overview of Lyme disease in the UK and Ireland
Lyme Disease Action UK (FAQ)
Spreading awareness of Lyme disease is really important as the disease seems to be on the increase in the UK and awareness is very low. When I say I have Lyme disease, most people do not know anything about it. Because the symptoms can be so varied, Lyme is often misdiagnosed. It is common for Lyme to be misdiagnosed as CFS, like in my case, so the more people are aware of Lyme disease, the higher the chance of treating the illness quickly and efficiently instead of in its later stages when it is much more difficult to treat.
This American study found that 88% of "CFS" patients treated with antibiotics experienced some improvement.
Lyme misdiagnosed as CFS - USA study
This is a huge deal. CFS is so debilitating, has no known treatment, and some people are severely disabled and unable to work or lead any kind of normal life. Antibiotics are not expensive drugs. A simple antibiotic could make so much difference to so many people. Some doctors seem to be against using antibiotics long-term due to the risk of side effects, but in this case the benefits clearly outweigh any negative side effects. Antibiotics are given long-term for acne, so I do not see any reason why they should not be tried in these cases. I know they have made such a huge difference to me - they really have given me my life back.
If you are reading this, please tell someone else about Lyme disease. Increasing awareness may help prevent someone from becoming really ill.
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