2017 has not been an easy year for me. I’m still stuck in bed, and just when you think it can’t get any worse, my pain is worse than ever. It’s been really hard to see all my old friends progress, finish uni, and start full time work. I really hoped to be able to say I’m on the mend for 2018, but sadly that’s not the case.
I started off this year with my new Amerigo jumping saddle, which has honestly changed my life, and Dave’s! I did a little showjumping show at my yard, on New Year’s Day 2017, and he jumped perfectly. He had gone from refusing even a cross pole, to jumping a full course of fillers. I really thought that I would be able to jump more, even compete this year. Unfortunately, that was the only time I got to jump this year. I did manage to pop a cross pole last month, but that’s it.
On the other hand, I am incredibly proud of Dave’s schooling. He was practically unrideable for the whole of 2016, and I would come home in tears not understanding what I was doing wrong. It turned out to be a saddle issue (read my Wow blog here – https://braceyourselfeb.wordpress.com/2017/07/08/wow-saddles-yay-or-neigh/), so now that we have a perfect new saddle, things are looking up again. Dave has always had a very difficult canter to ride, but I finally cracked it a few months ago. It’s taken me almost 3yrs to just be able to ride a basic jumping canter. It’s a slow process, but any progress is good progress!
He is still a ridiculously spooky, overreactive horse, which is most likely down to me not being able to ride him much. I barely manage once or twice a month. It takes so much effort and determination just to get dressed, and get into the car, yet alone ride. By the time I’m home from the yard, I’m in agony. I drag myself back into bed, and don’t move for another week. It really doesn’t seem worth it a lot of the time, but without Dave I don’t know what I would do with myself. I would never leave my bed, or walk at all. He is my form of physio, with the added bonus of being very loving!
This year I finally bit the bullet, and went to the The Royal Windsor Show to buy some custom riding boots. I’ve struggled trying to buy good long riding boots for many years now, but with my legs being so weak, it’s really important for me to have well fitting equipment. Joshua Jones were really helpful, and patient with me being useless at decisions! I adore my DonaDeo boots, even though they are still a pain to get on. My legs swell a lot, especially the left one, just from walking, so it’s a real fight to get them on sometimes. Let’s just hope they stretch some more soon. They have really made a difference to my stability on Dave, and I no longer have to worry about clenching my toes to hold my boots on!
Moving onto my health now. I have seen quite a few different specialists this year, which has been really stressful. Going into hospital makes me very anxious, as the smell always reminds me of my surgeries, and makes me feel very sick. I don’t travel very well either, so being in the car for any amount of time is awful for me. It’s excruciating to sit upright for long periods of time as well.
At the beginning of the year I saw a new specialist who I really liked (for once!), and he told me he would have me “improving at 19, and cured at 20”. Well, let’s just say, not once did I see him in clinic although he promised to see me personally, but I was left to see his registrar instead. I’m a very polite person, and would rather suffer in silence than cause a scene, but I actually had to walk out of one consultation. Driving to the hospital, waiting 2hrs in a waiting room, then not even getting to see the doctor you made an appointment with is incredibly frustrating. I would end up having to wait outside in the cold, as I end up having a panic attack, and overheating from being in so much pain and waiting.
I then went to see a Neurologist who was highly recommended. I won’t go into too much detail, but he basically blamed every single thing wrong with me on the Morphine. Baring in mind, I have had these issues way before I started taking Morphine, and have had multiple surgeries. I wasn’t too impressed with that answer! This was the point when I decided to start weaning off my painkillers though. I’m hoping that by coming off all of them, I can start again, and see what pain is from my conditions, and what is a side effect of my painkillers. I’ve already fully come off my Methocarbamol (or Meth as I like to call it!), and cut down 100mg of the slow release Morphine. It was very hard coming off the Morphine, as I was in so much pain, but it has to be done.
Last week I finally managed to see my actual specialist. Miracle! We had a long chat about my future, and what can be done for me. The next step is to have a Spect CT scan, which is when they inject a radioactive dye that shows any inflammation/pain points under the CT scanner. This should show where my pain is actually coming from, as I have multiple issues going on. I’m also having an MRI on my neck, as thats very painful too.
About 6 months ago, I got a letter through saying they had gone back over my 2016 scans, and a rare cyst (meningeal diverticulum) had been found on my spinal cord. No one would explain to me what it was, or what it meant. There was very little information online either. During this appointment, my specialist finally showed me where it was on my x-rays, and it’s scarily obvious! He said it could explain why I’m having issues with my bladder not working properly, rather than it being blamed on my discs pressing on any nerves. I’m also meant to be having tests done on my bladder, but as they are so invasive, I’ve decided to leave it until I can’t cope with my bladder problems anymore.
My doctors really want me to start socialising again, and doing more “normal” activities, but it’s really not that simple. I hate being bed bound, and would love to go out again. I just don’t know anyone that understands my disability enough to help me go out. Also, the reason I throw up when I’m in agony from being out of bed doesn’t help either! I did try making new friends earlier this year, but it ended with them getting fed up with my back problems, and not speaking to me ever again. It wasn’t a pleasant experience, and not one I would want to go through that again. I already have enough stress with my back issues.
I started making makeup tutorials on YouTube this year as well. I love filming and editing them, and they also give me something to concentrate on. I hope to be able to expand my YouTube channel in 2018.
So, overall this year has been pretty terrible, with Dave being the only positive in my life. My wish is to be able to jump in a BSJA competition in 2018, but who knows. I’ve been saying the same for the past 3 years! I just hope that I get some treatment options, and can at least control some of my pain and have some semblance of a “normal” life (whatever that is!).
I hope that you all had a great year, and thank you so much for supporting my blog! It means a lot to me to have an outlet to write in, and that you all read it. Onwards and upwards!
Here’s to a happy and healthy New Year.