I’m sure I say this EVERY TIME I write one of these posts but how on earth has it been three months since I wrote one of these updates? as I’m getting older, the time seems to pass by so much quicker… anyone else feel like that?
Well, what a blooming year 2020 was for me and my health. If I’m being totally truthful with you, I genuinely think 2020 was one of the hardest years I’ve had since falling ill (in 2013). it was just one battle after another, none of which got sorted therefore, I’m going into this year with a mess of a body. If I can describe my body best right now, it would be a total and utter car crash.
Although that being said, I survived. I survived every single one of my hardest days. 2020 really showed me how much strength I do have and that’s something I’ll continue to remind myself throughout this year when things get tough.
But here we are in the second month of 2021 and I’ve got a few things to update you on from over the last 3 months. So this may be a long one. Grab yourself a cuppa tea and a bag of biscuits and let’s get into this;
Migraine Update / Botox Appointment – 9th November 2020
On the 9th of November, I had my second dose of botox for my chronic migraines.
I don’t know if anyone whose had botox can relate to this, but for around 2 to 3 weeks after having the initial botox injections, I’ve found my migraines to be the worst they could possibly be. I’ve found this to have happened with both rounds of botox so that’s something which is a bummer BUT that being said, after having the worst migraines for around 2 to 3 weeks, I woke up one morning (after the second round of botox) and my migraine was significantly better. I mean, one thing I’ve mentioned to you guys before is that my migraines constantly make me feel hungover in the mornings. It’s a horrific feeling to wake up to everyday but on this certain day after the worst possible migraines, I didn’t feel hungover. And I’m overjoyed to say that after my second round of botox, I’ve noticed a huge difference in my migraines.
Quite honestly, even writing this update brings tears to my eyes. I, someone whose literally tried every single migraine medicine on the blooming planet, has finally found something which works. That’s an emotion I can’t even explain. Honestly, when I woke up that morning, I was baffled by the fact I actually felt ok. I didn’t feel like I’d had 50 shots of tequila the night before and it didn’t feel right at first. I didn’t know how to process the fact I actually didn’t have a migraine. I still wake up now and feel like it’s a dream.
Now, i do want to mention that I still get migraines a couple of times a week, they haven’t gone away completely (this is totally normal) but that is a life changing amount of migraines to have compared to having migraines all day, every day for the last 2+ years.
I’m having my third round of botox on the 8th of February, so I’ll of course keep you updated on wether this treatment continues to work (let’s pray it does)!
Diabetes Appointment – 25th November 2020
If your a long term reader of mine you’ll already know but if your not, I was diagnosed with Diabetes in August 2020 and started metformin in September 2020.
This was actually my first ever appointment with the diabetes consultant. We spoke over my history to give her a clear picture of my journey with my illnesses and what could have made the diabetes come on. It’s still hard to pin point what illness it was but it’s believe it could be my Gastroparesis (stomach paralysis) that’s brought on my diabetes.
Before my appointment, I had to do a week solid of finger prick tests to test my glucose levels, 5-6 times a day. Let me tell you, my fingers did not thank me for that haha. Anyway, the results weren’t what we was hoping for. We was hoping that the metformin would bring my levels down by itself but it hadn’t, instead my levels continued to rise quite significantly. Therefore, my consultant had no choice but to put me on a long-lasting insulin called Levemir.
For some reason, I just had a gut feeling I was going to be put on insulin. It wasn’t something I wanted but I know it’s the right decision to try and get my diabetes under control.
I’ve been on the insulin for around 10 weeks now and I’m still trying to get the dosage right. I’m currently working my units up every 3 days to try and get a good reading both morning and night. So far, my glucose readings are still quite high. My consultant did mention that if the insulin I’m on didn’t work by itself, then another insulin (which is fast acting insulin) would be added in. I’m currently in regular contact with my diabetes nurse which is really helpful as she’s guiding me through this journey!
Gastroenterology Appointment – 12th January 2021
Back in my November update, I mentioned about how my bowel had gone from one extreme to the other, well let’s just say, it’s gotten no better. If anything it’s worsened.
My consultant rang me on the 12th and we had a conversation about what’s been happening etc. She’s diagnosed me with Malabsorption Syndrome which is a condition where my intestinal tract is unable to absorb nutrients, vitamins, minerals etc that go into the blood stream, that the body needs. I’ve got to have a SeHCAT scan done on the 8th of February, then again on the 15th to test for bile acid malabsorption. We do believe it’s the Ehlers Danlos Syndrome causing my malabsorption syndrome as it’s quite common with this condition apparently.
I’m being started on a new treatment to hopefully help my bowel out, it’s not 100% that it’ll work but I’m here to give anything a go!
Cardiology Appointment – 21st January 2021
To be completely honest with you, my PoTS (Postural Tachycardia Syndrome) has been playing havoc with my body for a few months now so this appointment with my cardiologist couldn’t come soon enough!
I’ve been having symptoms such as: heart palpitations, high pulse rate, dizziness/light headedness/ feeling faint every time I transfer, breathlessness, swelling of my feet, circulation problems etc so my consultant has decided to add a new heart medication alongside the one I’m already on to try and get my symptoms under control. I’m also being started on a salt tablet as he believes that the low salt in my diet could be adding to the symptoms.
I’ll be giving these a try and my consultant will be ringing in a couple of months for an update. If these new tablets don’t work, then we’ll be talking about other treatments which are out there for me to try. Fingers crossed they’ll work their magic and I’ll feel better (heart wise) soon.
Urology Appointment – 21st January 2021
For what was only meant to be a 4 week catheter trial to strength my bladder muscle, has officially turned into a long term situation. Unfortunately, the elasticity of my muscles has completely gone therefore my only option right now is to keep the catheter in.
My consultant is sending me to a urogynecologist who will run further tests on my bladder to see what damage has been done and from there, we’ll decide wether surgery is an option or if other treatments are available. But as of right now, the catheter is for keeps *sad face*.
Well, if you’ve made it this far then you deserve a medal! But seriously, thank you all so much for always taking such an interest in my journey, it genuinely means the world.
I say this all the time but I hope by me sharing my journey with you all is helping you understand my illnesses that little bit better and it’s helping to raise awareness for these illnesses – as that’s unbelievably important to the chronic illness community!
I shall see you guys, back here for another update in a couple of months time.
Sending you all tons of love and hugs as always,