February 26th, 11:30am: My Appointment at The Hypermobility Clinic at University London College Hospital :)

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Woke up early in preparation for my appointment at the Hypermobility Clinic in the University of London College Hospital with Dr. Morris. We arrived late, because I always do no matter how hard I try. She was a bit quick with me at first, taking my history REALLY FAST. I’m not exactly the most concise with the words. She then gave me an exam and some weird walking to do in my underwear. She came to the conclusion that I had no malformations nor had I experienced any dislocations and that I was very flexible person with good muscle strength, which was definitely in my favor.

She did ask why I had come all the way to London and I replied that basically my local doctors and even specialist physio who diagnosed me just don’t really know what to do with me. She was shocked at the combination of medications I am on and stated that often GPs are prone to just trying to give as many medications as possible to alleviate the symptoms instead of coming up with a treatment plan to improve quality of life. I totally agree.

What she did say first that made me very happy was, that with a lot of hard work and time, there isn’t any reason why I shouldn’t be able to lead a fairly normal life. We talked about referring me to the pain clinic and to a Rheumatologist who specialises in pain management, in Cambridge which will be an easier journey for me. I will also be trying acupuncture and hopefully be able to find a physiotherapist who understands my condition. A great start!

Oh she also mentioned that I’m while I’m physically fit, I do need to work on my cardio endurance because it’s pretty weak (more dancing, yay!). My blood pressure and heart rate were both high, and so they’ll be monitored by my GP too, as well as my glycemic levels because there was traces of it in my urine (I love you sugar/carbs)!!! Personally I don’t get ‘diets’, I only do life changes and I’ve never really changed my diet too much past what I love eating (because life is too short and that’s what exercise is for!), so I guess I’ll be making some small life changes in regards to my eating habits. Bit by bit, of course!

The next thing we started talking about is Cognitive Behaviour Therapy (CBT). She recommended this type of therapy so that I could start to get a handle on my pain levels. She says I’m a highly sensitive person (it’s like she knows me!) and that when I start to feel a certain level of pain, I probably start to give in to the vortex of pain which just makes the pain level worse (my words, not hers). I find that totally true and usually know I’m at that point when I’m near crying and (like I told my friend Stacy the other day) am just waiting for some angelic or demonic being to come and say, ‘Are you ready for your next journey child?’ and I’m like, ‘Uh YEAAHH, where the fuck have you been?!!’ I did learn to use Biofeedback when I was a teenager and do use that as a technique to calm my pain levels and even have a YouTube playlist with cute and funny animal videos that make me feel all fuzzy inside, both which help and are kind of on the same lines as CBT, however if I’m past a certain level of pain then I’m not in my ‘right mind’ enough to think of doing either of these techniques which could help me. It’s probably because I have come up with it myself and haven’t been trained to do it in the most effective way so I’m really interested in how CBT can help me.

Hopefully once I have all of this help firmly in my ‘toolbox’, I can stop taking the opiates which I use for pain relief. Dr. Morris was very adamant that I should stop taking them because they do make you depressed and block part of the benefits of the Fluxotine I take, for depression which is just useless. I have become very used to the feeling of being a bit ‘out of it’ and learned to function as best as I can. Maybe that’s why I’m so wordy? Hmm.

Oh yes, so I started asking all my questions I had come prepared with and she showed me a slide presentation of some of her research which was basically my life. When she was explaining the CBT she showed me a photo with some pandas in it and was basically saying that when you distract the mind you can distract it from the pain. What was funny was that I have been so into baby pandas lately! How freaky is that?! Oh Dr. Morris, if you’re reading this you have got to see this, it’s my favorite at the moment!

So, we talked about many more little things. It was just so amazing to meet with an expert who ‘knew’ me and could give me a confident plan of action. I think she was happy that I had made progress on my own to the extent of my knowledge and am ready to make more effort in any way needed to get my life back. She’s probably seen so many patients who are adverse to physical fitness and haven’t tried (free) alternative therapies to see if they work. I know there are many suffering who are not as lucky as me, who deal with painful obstacles such as dislocations which keep them from progressing as fast but I have witnessed MANY who just want the drugs, just want the therapies in which they have to put in little effort, and come up with many excuses to why they can not push themselves everyday to becoming better. Even I, in my most depressing days last year when I found out that this condition is progressive and incurable, am guilty of just laying there and feeling sorry for myself instead of moving forward. I don’t know what kind of day she was having (she seemed a bit busy at the start) but we really hit it off and I just had to give her a huge hug to let her know what a difference she has made to my life. She got more things sorted in under an hour than anyone else has in the last year! Love it, so glad I met her and that she’s on our team!

For the last couple of month I have been making small steps to be more active (just little things!) in my daily life and to really work toward my physical goals. I feel so much better emotionally than before. I can’t say that I’m not in a great deal of pain at the end of everyday but at least I know it is for a good reason. I get up and get at least one thing done that I could feel good about, that makes the pain worth it. Most of the time … usually. 😀

If you wanna read what I got up to in the rest of my day in London with Charlie go to:  https://painlovesme.wordpress.com/2013/03/02/a-new-week-monday-25th

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