Tuesday, 26 January 2016

Just a bit of wheeling

Lately, I've been trying to up my time spent in Buster. So far, I haven't attempted the Busway in 2016, mostly because the track is a lot easier to get to and although it isn't exciting it does give me the opportunity to play around with intervals very easily. Also, I've been getting some new equipment and I don't want to go out on a really long trip on the Busway until I'm confident that the equipment and I are 'getting on'. One new piece of equipment is my shiny GPS watch. It has a heart rate monitor too (which takes your pulse from your wrist, meaning you don't need a nasty chest strap) and I'm finding it really useful so far, as it's helped me track loads of workouts. Here are a few:

I've done various different things, such as some 10,000m slogs on the track:
Some interval training on the track by myself:
 Some interval training on the track with the others:
Some more interval training on the track with the others:
and to mix it up a bit, some interval training by myself with an added bit of going backwards around a bend:
As you can see, it's not particularly exciting.

What is a bit more exciting is that I can have a look at things like speed and heart rate, and I can compare these to where I am on the map (if only that were interesting!) or how far through the session I was, in terms of both distance and time.
Cool, huh?
Almost as cool as...
 NEW WHEELS! More on them next time.

Sunday, 17 January 2016

One of the things that keeps me pushing.

You know how Facebook has that thing where it shows you photos from the same date in a previous year? Well, I got one of those the other day, and it was this:
And here's the story that goes with it...
One year ago, I fell off a horse. This is not necessarily a problem, except that I landed from great speed and a reasonably tall horse directly onto a fence post, which shoved my already dislocation-happy shoulder about and 'mangled' the nerves. There was enough force behind it to make my (tight, kiddie size!) glove fly off the hand and land 20m away. Fortunately, as my mum immediately pointed out when I rang her from the hospital, this arm was already pretty hopeless so at least it was that arm and not the other!
Sadly loss of function was not accompanied by loss of sensation.
Turning up with a sling did raise some eyebrows at my first ever wheelchair racing session, which was two days later. I'd been really looking forward to starting, and I'm stubborn so I was going to go anyway. I was assured that the chair would still run straight (it didn't) and that I'd be able to take part and have fun anyway (I did).
With John​ helping by periodically picking up the front wheel and putting me on a straight line again, I laboriously picked my way from one end of the track to the other by just pushing with my right arm and whining about the painful glove on it, whilst Alice​ and Rebecca​ whizzed round looking scarily quick and professional, and Becky​ reassured me that one day I could manage it too.
Go, Alice, go!
This time a year ago, my health was in a pretty catastrophic state - even without the arm injury. Addenbrooke's were seeing quite a bit of me and I was really struggling to get work done, so I was signed off from my PhD to have some time off to rest. I had stopped rowing, I was struggling with the riding I was doing (partly because the fall had, for the first time in my riding experience, massively knocked my confidence) and I couldn't focus on work at all. However, wheelchair racing was brilliant for me. As a complete beginner, I don't think I really showed much talent! The other wheelies and all our coaches were lovely, though, and bit-by-bit we began to learn what would work and what wouldn't, and very slowly we got an idea of how to steer the blasted things. I also learned that not having one arm pinned across your chest does make you faster - even if the returning arm isn't really up to much pushing and mostly just moves about to keep me balanced, at least you can then actually lean down far enough to reach the pushrim...
...which I wasn't really managing with the arm in the sling.
Anyway, the point is that this time a year ago I had a lot going on in my life but just not enough energy/health/spoons to try and deal with them. That's why, when I saw that the 6th February 2015 would be a British Heart Foundation national fundraising day, I decided to share a story with you instead of commit to the more normal physical challenge. The story I shared is here. I couldn't quite believe the response it received - both in comments and donations. I was so touched by all the lovely things that people said. It was indeed very difficult to share what happened to our family, but I received so many private messages of gratitude and support that I'm glad I did it.
Me and my dad.
At the time, I wrote this:
"at the moment, I am simply not well enough to take on a challenge that I would ask you to sponsor me for, although if you like the idea of me going through pain to raise money then please feel free to sponsor my attempt to learn wheelchair racing." 
Well. The big driving force for me behind doing something on 6th February last year was that that was the fifth anniversary of my dad's death. This year, when I was looking through some post from the BHF, I saw something else and went cold. It was as if my dad had planned it! What I saw was this: Venue - Warwick. Event - half-marathon (flat course, suitable for wheelchairs). Date - 3rd April 2016.
My mum grew up in Warwickshire, and as children my brothers and I loved spending time there with our grandparents. A nice flat half-marathon is just the kind of event that I am capable of now. And finally, the date - well, last year, it was on the anniversary of his death. This year, on what would have been my dad's 63rd birthday (3rd April), I will be racing the half-marathon in Warwick in my racing chair - which funnily enough is named 'Halifax' after the plane my grandad (also a Warwickshire chap) flew in during the war. I can't think of anything more appropriate than the location, the date, the charity, and the event. It's actually really spooky!
"I don't know if I'm meant to be going towards the light or staying away from it..."
To give you a few more details on heart disease: research collected by the British Heart Foundation states that:

  • "Cardiovascular (heart and circulatory) disease causes more than a quarter (27 per cent) of all deaths in the UK, or around 155,000 deaths each year - an average of 425 people each day or one every three minutes.

  • There are an estimated 7 million people living with cardiovascular disease in the UK 3.5 million men and 3.5 million women. An ageing and growing population and improved survival rates from cardiovascular events could see numbers rise still further.

  • The economic burden of CVD, including indirect costs from premature death and disability, is estimated to be over £15 billion each year in the UK. Healthcare costs alone are estimated at up to £11 billion."
All that remains is for me to ask you for sponsorship. So far I've done one half-marathon (not including training). I've got another on the 26th March (the World Half-Marathon Championships), then just a week later I'm doing this (not great timing but this one felt like FATE and I'd already entered the other). It'll be a huge challenge for me to do two half-marathons in a week, but I've been thinking about my motivation to race in each event, and I know why the second will feel easier. You see, I know why I race. I race because I enjoy it, of course, but mostly I race for other people. People are more valuable than anything else in this world, and if through me racing I can benefit other people, then that feels great. So, to put it simply, I race for people: me, my coaches, my friends, my family, or anyone who may benefit through fundraising.
Looking at it this way, there are a few good reasons to race the World Championships - my coaches, John, my mum. But to race for the British Heart Foundation? There are millions of reasons.

Please click here to share and donate if you are able.

Friday, 15 January 2016

This was my Christmas, how was yours?

It's been a while since I last posted. Lots has been happening - here's a summary of the Christmas holiday.
Rosie and Maple wearing cracker hat necklaces/dresses. It's blurry because they never sit still.
First off, I have a new niece and I couldn't be happier. She's the first child of her generation in my family and she's absolutely lovely. Just as with John's niece, cuddling the new babe can't help but put a smile on your face. She was born a week before Christmas and we were so excited for our first Christmas together as a family.
On the basis that we're not sharing photos of the baby online, here's a puppy at his first Christmas.
Unfortunately, she had other ideas. At just five days old, she was showing signs of a skin infection. The midwife saw her on a routine home visit and was worried, so they went straight to hospital. From there, things went rapidly downhill. Her skin was peeling off all over, exposing raw red skin underneath; her temperature was high; she was very uncomfortable because of the pain; and it was found that she'd lost more weight than would have been normal. The infection was spreading very quickly, and the doctors needed to work immediately to save her life. That first night was dreadful. We didn't know if she'd be transferred to Great Ormond Street Hospital (the UK's premier children's hospital) or not. We didn't know if she'd even survive the night.
Well, to cut a long story short, she did. She's a proper little trooper, assisted by the wonderful doctors and nurses and her fantastic parents. My sister-in-law, Katie, was obviously distraught at what was happening to her baby. Because of the lack of the upper layer of skin, the doctors were struggling to get a cannula in and couldn't tape an NG-tube onto her face. She couldn't be picked up to be breastfed and she wasn't tolerating formula milk, so day and night Katie expressed breast milk every two hours. Fortunately, once the little one was drugged up on morphine and being pumped full of antibiotics she was also quite happy to feed. This helped to stabilise her weight, giving her the energy to fight back, and also meant that all the good antibodies in Katie's milk were being transferred to the baby.
Yes, dogs will replace baby in this post.
She didn't go to Great Ormond Street in the end. The infection was similar to suffering a burn over the entirety of her body, and the hospital she was in (about five minutes from my brother's house) has a world-class Burns Unit. They were the ones who managed to get a cannula in, and they were the ones who came up to the neonatal intensive care unit to dress her skin and wrap her up in bandages. They kept on top of everything - the risk of the infection spreading to her organs, the risk of dehydration, the pain she was in, her unnerving ability to remove her bandages - everything really. Katie was also admitted as a patient to be treated for any possible infection. After a week she was discharged and moved to parents' quarters instead of patients' - which turned out to be much nicer!
Being a mum is tough...but it beats being a patient.
After about a week, she was stable enough for visitors other than her parents. Seeing her in her little incubator, and in a private room, was quite scary. Obviously incubators are a good thing because they keep people alive, but you always hope that your baby won't need one. She slept for most of the time, then had a lovely twenty-minute window where she was gradually waking up and blinking at us whilst blowing raspberries. Something that Katie said that day has struck me as particularly notable: "There were two premature twins born last night, so she's not the sickest baby in the hospital anymore." It was scary that she had been so sick; that she had been the biggest concern. She's such a tiny thing and it seemed that she would have no chance of fighting back.
She stayed in hospital for nearly two weeks, but made a full recovery. We were lucky - she had excellent care just when she needed it. We were so lucky that it didn't spread to her organs, that Katie is as strong as she is, that the Burns Unit knew what to do, that the doctors and nurses on the NICU ward were so good, and that my brother, Tom, is a calm and reassuring presence in a potential crisis. Apart from scaring me silly, the whole episode made me so proud of Tom and Katie, and - of course - of my little niece. Less than a week old and beating the odds to survive a life-threatening infection is pretty damn great in my book. In the words of one of the NICU doctors to Tom and Katie: "Your baby is full of vigour and zest." That she is.
Anyway, that pretty much made Christmas incredibly odd. None of us really felt like celebrating, because although she had stabilised by then she was still very poorly and was not out of the woods. The result has been twofold: first, I have an awful lot of stuff to catch up on now that I didn't do at the time because of doing baby-related things; and second, we get to have Second Christmas next weekend so that we can all celebrate together, and so that the baby can finally have her Christmas presents (not that she'll know enough to appreciate them!). Second Christmas will be great. There'll just be my brothers + partners and baby, my mum, me and John, and the dogs - in other words, a lot of my favourite people in one place.
Of course, there should really be two people in this picture to represent Rosie and Maple.
My plan for new year had been, like in previous years, to visit John and his family in Hampshire. When the baby was sick, though, and we didn't know what would happen, I didn't really know how things would turn out. Fortunately, she improved in time for me to feel confident enough to go and see John and family, and was even discharged from hospital in time for new year - news which delighted all of us in Hants. I love being at John's house. His family are great and it's always lovely to see them. In particular, we got to see quite a bit of Kate (John's sister) and her little girl, Charlotte, who is about 13 months old now. Charlotte is an absolute delight and I can't believe how fast she's developing! She toddles around very happily (and very rapidly!) on her own, and seems to learn something new every day. She's a very happy little girl and seems quite comfortable having cuddles with me - something which I wouldn't necessarily expect for someone of her age who doesn't see me very often. I absolutely love cuddles and playing games with her, so I'm very glad that she's such a happy little soul.
Very happy times with mum Kate, baby Charlotte and John. :)
Another (lesser!) advantage of John's house is its proximity to Robinson's, which is an equestrian store. A quick trip there is a lovely treat for me. This time I found lots of jodhpurs in the sale (including some in CURC colours!), a dressage/schooling whip for training, some new brushes to replace the grotty ones in my grooming kit, and some bits and bobs to take along to Second Christmas as presents. The schooling whip has already come out and proved its worth as a replacement to my leg in training. I can use it to press gently against the side of the horse - this is what you'd normally do with a leg but I really struggle with that. It helps me to keep the horse in the right place and on the right bend.
A bit like how they use the cane in side-saddle.
As well as spending time with family, I've had a few hospital appointments. Highlights include my gastroenterologist telling me I don't have coeliac disease (which I didn't think I did, but he thought I might - so that was good news!), a neurologist being a little bit useless but agreeing to see me in a few months' time to see what progress/regress has been made, and a really rather odd rheumatologist (it was late on Christmas Eve, so perhaps he was distracted) being pretty wonderful and offering to arrange hydrotherapy for me - which I think will be really useful. He complimented the tinsel on my chair so I'm now a fan of him. I should also mention the lovely phlebotomists at Addenbrooke's, who kept the department open past closing time on Christmas Eve so that I could get my tests done - when I got there they were all in coats and ready to leave, with no other patients in sight, so it was really kind of them to wait for my rheumatology appointment to finish.
Seeing the gastroenterologist was interesting, as I'd forgotten about the rather stressful gastroscopy I'd had. Having had previous endoscopy procedures, I have learned to take the sedation before having a camera put down your throat. I wasn't especially fussed about the procedure - my mum went with me so that she could take me home (you have to be accompanied if you have sedation) so I didn't really have to do anything either than lie on a bed. After a short wait, I was wheeled through to the theatre and introduced to the endoscopist and the nurses. After a bit of good-natured banter, it was time to get going. This was where things began to go a bit tits-up! One of the nurses wanted to insert a cannula for the sedative, so I proffered the better arm for this. I was a bit distracted by a chap attempting to put horrible spray on my throat so I didn't really spot what was happening until I heard a commotion to my left and looked over to see blood going basically everywhere with a really upset-looking nurse apologising profusely. I was doing my best to tell her that it didn't really matter when two things happened in quick succession - first, I stopped being able to breathe properly, and secondly, I was suddenly getting some groovy-smelling oxygen. The next bit is a bit of a muddle and I don't fully remember. Because I'd now been lying down flat for a few minutes (longer than I've done in months!) there were stomach contents wanting to reappear.
In Recovery - "reflux!"
In addition to this: I couldn't really breathe; I was still shooting blood over the floor, the bed, the nurses, the furniture and the room in general; I had a bite guard in my mouth which was activating my (very powerful!) gag reflex; and the endoscopist was trying to use the needle in my scarlet arm to inject some sedative. I vaguely remember them saying to try to breathe normally (!) and me totally failing to do this, then them saying, 'we'll have to give you a bit of sedative', and that was it. I came round about an hour or so later to find a doctor standing by my bed in the recovery area. To my amusement, I was informed that it had taken a lot more sedative than usual to knock me out - this is common in EDS but the 'mind blown' look on her face was quite funny! Anyway, that was all a lot of fun, and I was glad that it didn't show I had coeliac disease. My mum took me back and I even got to go wheelchair racing that evening.
Sleeping off all the sedative.
I've also been seeing my psychiatrist a bit. I really want him to take me off one of my medications, but the fact that this has now been a goal of mine for nearly five years just goes to show that it's not particularly straightforward. The medicine in question is Quetiapine, which is a mood stabiliser. I've been on it since I was 17, and the problem with it is that it is really sedating and I want to see if coming off it will help me with energy levels. Fatigue is one of the most disabling aspects of EDS/bipolar/everything else and I would absolutely love to be able to have a longer day with less sleep and a lot less 'brain fog'.
This. Always.
Unfortunately, quetiapine is one of the only drugs that has kept me reasonably stable and, as with any psychiatric medicine, coming off it is not simply a case of stopping taking it. My psychiatrist needs to take me off it bit by bit over the course of several months so that we can address any negative changes in mood if they arise, and to make sure that my general health doesn't fail after suddenly stopping a drug I've been taking for 8 years. Added to these complications is the fact that my mood hasn't exactly been great lately. My doctor wants to get my mood a bit better before attempting to remove a drug, so he's upping a standard SSRI antidepressant before doing anything with quetiapine. This is difficult, because if my mood lifts too much I might tip over into manic states, and even if it stays stable with the increase in SSRI, I might then not stay stable when the mood stabiliser (quetiapine) is reduced. Personally, I'm pretty hopeful that reducing the quetiapine will be quite safe, because I'm still on a high dose of lithium, which has the same stabilising effect. However, my psychiatrist keeps telling me that I'm unusually sensitive to the changes of medication, and that in my case changes in mood can be sudden and drastic. In particular, I'm prone to dangerous 'mixed states' (all the nervous energy of a high with all the 'I want to die' depression of a low) so we need to be careful not to spark these by messing around too dramatically with the drugs.
Also this!
Another element that complicates all of this is the Amitriptyline which I currently take as a prophylactic for migraines. Amitriptyline is another antidepressant (of the SNRI variety, as opposed to SSRIs) but it is often used in small doses to prevent migraines. I suffered from far fewer migraines when I started taking it (down from daily or almost daily to a couple of times a week), then it became less effective, so it was increased, which worked for a bit, but then that became less effective too. I'm now at the stage where the neurologist isn't happy to increase it any further without consulting my psychiatrist about the possible interactions there. In the meantime, I haven't got much that's helping my migraines. Occasionally I find sumatriptan useful, but often this doesn't do anything at all. Tramadol/Meptid/other opiates don't help, and although I've found combining triptans with reasonably high doses of aspirin to be quite effective, I'm also aware that I shouldn't be taking any kind of NSAIDs on a regular basis because of the lithium.
That's if you want to stay out of the red bit, anyway.
I really need to get on top of the headaches because when they come (several times a week) they are very difficult to get rid of and can be extremely debilitating. If they're in the front of my head, there's typically a lot of pain in one eye too (usually the left), which makes it really painful to keep the eye open, to look at anything, or to try to focus on something. The headaches are also worse every time I move and with any kind of upright posture, which means that you basically just have to lie down as flat as reflux will allow until you feel slightly able to attempt movement again (usually after a couple of hours, lots of drugs, lots of heat on the bad eye, and with any luck a bit of sleep).
"My eye hurts."
The headaches are also being aggravated at the moment by the introduction of fludrocortisone, on the instructions of the cardiologist. This is meant to help with the PoTS symptoms, but I've been having so many headaches since I started that it's hard to tell if it helps or not (my headaches often involve blacking out and immense pain on moving my head even slightly, which is kind of similar to PoTS). Of course, the whole thing is linked together even further, because amitriptyline itself can cause problems like orthostatic hypotension, which whilst not a diagnostic criterion in PoTS is often comorbid, as is the case with me (in a tilt-table test last year by blood pressure dropped from 114/77 to 72/46 on having my head raised to a near-standing position). It can also cause tachycardia, which very definitely is related to PoTS! Oh, and, of course, it causes fatigue, as do all of them.
In addition to these types of headaches I'm having more and more problems with my neck, the back of my head, and my jaw. I've been feeling for years that my head just feels too heavy for my neck to hold up. I have neck collars to help with this but they aren't particularly comfortable even if they do take the pressure off my neck. I feel that my neck muscles are working so hard to keep my head supported that the tension comes round into my jaw (TMJ pain and stiffness has always been a problem) which just exacerbates any existing tension and pain. I cannot force my TMJ and the muscles around it to relax, which is very frustrating, as it causes considerable discomfort day and night.
Yes, all of the above...
I think it might also be contributing to hearing problems: the stiffness is far worse on the left side, because my jaw is wonky so that side is tighter, and the left ear is far worse than the right ear in terms of tinnitus, hearing difficulty, and hyperacusis. I struggle a lot with loud sounds which are very painful, and my left ear seems to be ridiculously sensitive to any noises. As an example: as I sit typing this, it's quite windy outside. Every time the wind blows outside our (closed) windows, my left ear makes a funny stuffy whooshing noise - kind of like you get when there's water trapped in your ear, or when your ears sound funny when you yawn. It's been doing this for months. It also does it just randomly, hundreds of times throughout the day. It's bothersome because it means that I miss lots of bits of conversations. Having subtitles on when I'm watching a video or something is helpful with this but unfortunately you can't ask people subtitle all of real life! I need to see a doctor to discuss and see what can be done. A bit of research has suggested hyperacusis (when my ear isn't 'whooshing', it's definitely incredibly painful to hear even normal noises like people picking up cutlery) and possibly problems with the tensor tympani muscle, causing the funny noises. I really just want to see a doctor to find out if this is correct and what can be done - whether it be something that could be addressed with hearing assistance or if the neck and jaw need to be examined too.
That bad boy, bottom right.
So yeah. Those are my Christmas hospital stories! Other things have happened/are happening, but they can be put into another post. Final comment on all this: when the baby was sick, I called on the 'God Squad' - certain friends who I knew would pray for her and the family. Their support was very much appreciated and it was good to have people a bit more distanced from us than my mum, brothers and John to talk to about it. Thanks guys.