Posts Tagged ‘hospital visits’

Okay, first of all, I’m tired out today. I went all the way to Newcastle for an appointment with my specialist (who is really lovely) and really I can’t understand why I had to be seen in person. I appreciate her giving me her time very much indeed, but in order to have her time, I have to travel miles and miles on the train and it takes up my whole day! The first time it was necessary as I wasn’t diagnosed so needed to be wired up to monitors and what-not… but this time all we did is talk for a few minutes about how I feel on this latest medication. Don’t get me wrong, I feel VERY privileged that this hospital is so sooo much better than my local one (which was just awful) and that they are thorough with their patients and you get to see the actual consultant (not some registrar like always happens at my local) but really WHY was it necessary for me to go all that way just to say what could be said in a fax or email or over the phone?

Anyways, it’s done now and I just go back in 6 months to talk about a ‘long term plan’.

On the train ride over there, I saw 5 deers! I remember very well the first trip I took there, back in April, undiagnosed and so, so nervous hoping that finally I was going to have my answer as to what was wrong with me. My Mum spotted the deer- a solitary shape alongside a stream. Today, I must have recognised part of the landscape because I started saying “I think this might be round about where we saw the deer, but I bet we don’t see another one.” Mum says “No, it was really early in the morning last time, they probably won’t be around at this time.” I say “Yeah, I bet it was just a one off.” Literally in the next few seconds, I see three sort of laying down but am not sure they are deers and Mum exclaims “There’s one!” and I see she’s pointing to a stood up fawn, just in front of the three laying down ones I could see. Then in the very next field, we both spot an adult one! So it wasn’t a one off after all. I think I may even have seen 2 on the journey home too in a different spot (it’s hard to tell sometimes on a train when you whizz by!). So it’s now my new sort of hobby- seeing how many deers I can spot on the Doncaster-Newcastle line. lol.

Now, you might be wondering about the title of this blog. Well, due to walking a long way yesterday (I’ll get to that) I have been walking with a very stiff leg- this morning I still couldn’t bend my knee (too painful) and when you walk with a leg that won’t bend at the knee, people really don’t half stare at it, like they are checking out if it’s wooden or not. Also, when on trains and sitting at platforms, when you have something that hurts, it’s amazing how many people seem to kick/knock and otherwise jar you in such a way that you wince and IT HURTS EVEN MORE!!!!!

Now, as for why my knee is in this state… well, ever since I learnt to drive I’ve had trouble with chondromalacia on and off.  Driving must flare it up as I didn’t get it to the extent I do since I’ve been a driver. I had a 4 year ‘break’ from driving once and didn’t suffer with chondromalacia- soon as I started driving again- it came back. It is very painful when it happens! It hasn’t happened in a while despite me driving as I managed to strengthen my thigh muscles after physio, plus I joined a walking group which may also have strengthened my muscles and thus helped my joint to be in a better alignment… but I have to keep up my walking it seems otherwise- hello square one. And lately, because of doing the new place up with bf, I haven’t been walking much or far. Plus, this particular weekend I did a lot of driving because I never ever get anhy quality sleep at his place and I was so tired Saturday that I wanted to come home to my own bed, plus he had an early start Sunday morning and I didn’t want to keep him awake with my insomniac fidgeting. So I drove home, and drove over again Sunday. So that was a lot of to-ing and fro-ing in a short space of time… followed by a very long walk!

Now, strangely enough despite having POTS I’ve never fainted nor have I had any real problems walking long distances. In fact this is one of the reasons why, when POTS was first mentioned to me by a friend online as something I should look into as maybe being the reason behind some of my wacky symptoms, I read up about it and thought- that can’t be what I have- and didn’t look any further into it for another year or two! But what seems to happen to me is I have the stamina to ‘get through’ things but then my body is worn out afterwards and I’ll either be really tired for days, or weak (often both) or will end up with a sore throat/cold/just generally unwell. So, I used to wonder why I was always tired, and why I caught bugs so easily.

Well, it turns out it was POTS that was causing those things. I only really found out because I did an 11 or 12 mile walk with my bf, finished it off with a terrific migraine aura that nearly blinded me in one eye, and then didn’t recover afterwards. When I say didn’t recover I mean, that set me into a ‘flare’ of symptoms of tachycardia and weakness and I felt so bloody awful I finally looked into POTS again and measured my own heart rates and discovered they were increasing 40-50bpm from laying to standing and so I sought out a specialist (after seeing a really crappy nasty cardiologist who told me to put weight on and forget about it and that it couldn’t be POTS because it’s not very common and even if it was, there’s not a lot that could be done about it anyway, so why test for it. grrrr!).

Now, one of the problems I’ve had with my bf is how he “doesn’t get” it. I can’t blame him because I don’t either and I’m pretty sure lots of my pots friends will be astounded that I could walk that far and not collapse or something. My bf has often said “but you walked 12 miles with me on no medication and you were fine.”

I told him I’m just really good at hiding how I feel and that’s pretty much true. I was okay on that walk for about half of it but by the end I felt half dead and was half blind. I don’t call that being ‘fine’, nor is being so weak afterwards that it takes you 6 months and 4 different medications to feel back to where you were.

But that’s the good news. Now I’ve found ivabradine I feel back to where I was before that horrible crash- actually even better really, because now I know what I’ve got, what causes my fatigue, and it’s being somewhat controlled- I can do things like long walks without having a nasty huge crash afterwards.

So, apart from my knee hurting me so much that I had to walk 6 miles without bending it (that is really, really hard- especially through long tussocky grass which unfortunately, a lot of the walk was!) which then made my whole leg ache- not to mention the strain on the left leg doing all the work- I had a really great 1o mile walk yesterday, and I didn’t feel tired!

See, despite the fact I can walk without any real problem, it wasn’t as pleasurable for the past year, since I had the crash around November last year (after the long, migraine inducing walk). Not on no tablets, not on beta blockers, not on calcium channel blockers or on florinef.  My bf was getting upset that I wasn’t showing enthusiasm for it anymore, but it’s hard to show enthusiasm for something that makes you feel like every step you take is sucking more oxygen and energy out of you til you feel like you’re going to drown in your own body because even though you’re breathing the air doesn’t seem to be working… and since he switches off mentally if ever I talk about it and also requested me to not talk about it as much, I haven’t been able to explain why, although I CAN walk… and although I enjoy his company and the countryside… it was an endurance and not a pleasure for me.

But NOW! Now I can get the enjoyment from it again! In a way I have experienced before, because there have been times when I’ve been stronger and had energy, but even better than that because those times were few and far between and only lasted for a short distance. Now I can be out walking for hours and not feel like I am pushing my body through some kind of endurance marathon. I can enjoy the nature, the scenery- I even talked whilst walking up a little hill!

So, 6 months since I was diagnosed and almost a year since I had “The Crash” I can FINALLY say… I am doing much, much better! 🙂 And it was really great to see how happy it made my bf, that I was out there actually ENJOYING walking with him again. 🙂 Even though we’ve had some ups and downs, even though he finds it hard to understand and to really listen and learn how my condition truly affects me, he’s stuck by me through the worst of it, been patient with me and not complained when I’ve lain in bed til noon or gone to bed for naps in the afternoon, held me when I sobbed myself silly because I felt useless and scared I’d never be able to work a job, and told me not to worry that he’d ever leave me because it doesn’t change how he feels about me… so it really is fantastic to be able to enjoy walking together again and see how happy and cheerful it makes him to have me out there with him, enjoying that. 🙂


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