Can you believe in a few days time we’ll be entering 2022? It honestly blows my mind that this is the last health update I’ll be sharing with you before 2021 is over – madness!
Well, what a year it’s been. It’s been a strange year for us all hasn’t it? Like many, I’ve had a bumpy ride with lots of highs and plenty of lows. I’ve struggled and I’ve laughed. It’s been a rollercoaster of emotions that’s for sure.
As you’ll know if your a reader of my updates, last year a lot of things went wrong for me and my body. I suppose I had hoped that by the end of this year, I’d be in a better position with my health but unfortunately, that just isn’t the case. This is the thing with chronic illnesses, it doesn’t just magically vanish and there’s no magic cure. It’s with you, always.
Anyway, before I get too deep, I’ll get on with today’s post. It’s a little different to my usual health updates, it isn’t going to be about my recent appointments, it’s just going to be general updates on my illnesses and how things have progressed.
So, let’s get into it…
Well, it’s been over a year since I first started Botox and what a difference it has made to my life. I went from being crippled in pain every single day to actually being able to function and I can’t put into words how amazing that is.
32 injections every 3 months has been the answer to all my prayers. I’m incredibly thankful to botox for changing my life the way it has. Of course, I still get the odd migraine here and there but the majority of the time, I’m migraine free.
I honestly never thought I’d reach this point with my migraines, I really didn’t. I spent everyday for 3+ years living with chronic migraines and I didn’t see light at the end of the tunnel. I had tried every single migraine drug on the market and nothing, not one of them even began to touch the pain I was in… until Botox came along.
I’m actually meeting my neurologist whose up in London in February so hopefully, I’ll be able to continue having Botox. I’ll keep you updated.
Ugh, where do I even begin. If your a reader of my updates, you’ll know I shared with you back last year that I’ve gone from one extreme to the other (chronic constipation to now having chronic diarrhoea). This sudden change of bowel habits is a rare complication of Ehlers Danlos Syndrome. My consultant has only ever had a couple of patients in her career have this happen to them (I do like to be unique… or rememberable I suppose haha).
I have never experienced symptoms so tough. Constant bleeding, haemorrhoids, stomach cramps, back and hip ache, severe bloating, nausea, sickness, spasms, reflux and the list continues on. It’s a whole new level of pain which I’m having to learn to live with.
Unfortunately, despite our best efforts with treatments throughout the year, we haven’t found any to work on controlling my bowel movements or symptoms and sadly, I was told over the phone back in November that there isn’t much more my team can do for me as my EDS isn’t going to get any better. If and when the diarrhoea stops, I’ll go straight back to being constipated again.
Honestly, this isn’t the first time I’ve been told that I’m not going to get better, actually it happens more regularly then I care to admit but that doesn’t make hearing it any easier. it’s a hard pill to swallow when I’m so desperate for them to help me. Ehlers Danlos is shit… really shit.
Sleep Apnea Update:
When we last spoke, I was explaining that I’d been having some trouble with my sleep apnea, I was waking up choking and short of breath throughout the night so my sleep apnea consultant sent me out a new machine to try.
It took a while to get use to this new machine as it is totally different to my old machine but thankfully, after a couple of nights, it started working amazingly.
Since starting my new machine, I’ve not had many (if any) choking episodes or had the feeling that I couldn’t catch my breath properly which is obviously the main thing I needed to sort out.
My consultant is SO happy with my progress with this machine, it sends data straight to my consultant so she knows how I’m getting on and she mentioned that I wasn’t having many obstructions at all throughout the night anymore and my oxygen sats are practically perfect.
Can’t ask for much better than that, can I?
My catheter has been a rollercoaster ride this last year, that’s the only possible way of describing it. Although it has/is helping me in so many ways, it does come with its complications, one being infections.
Baring in mind I’m on a long-term antibiotic which I take everyday called Trimethoprim, it seems my body just cannot fight off these UTI/kidney infections. I think in the past 12 months I’ve had over 30 courses of antibiotics to fight different bacteria’s in my urine. It seems the antibiotics will work for a week, then bang, a new infection comes along and we’re back to square one.
Now anyone whose had a UTI / kidney infections will know just how painful they can be. My main symptoms are hot flushes/temperatures, abdominal pain, kidney pain, increased sweating, blood clots, darkened/cloudy urine, less output, smelly urine (omg SO smelly, think of rotten eggs then times that by 1000) and my worst symptom being the bladder spasms. Oh my days I can’t even put into words how painful they are! Some days, I’m doubled up on the sofa, unable to move as the spasms are one after the other, it’s unbearable at times. This all being said, I’d be in a much worse situation without it.
Im still currently waiting for an appointment to see a Urogynecologist, it’s been 12 months since I was referred so I obviously have been lost in the system. So my GP has re-referred me and hopefully I’ll get to be seen by them in the new year *fingers crossed*.
PoTS wise, I’m actually doing ‘okay’ at the moment. A couple of months ago I was started on a new heart medication which I take alongside my other one and the two of them together seem to be working well.
I still get symptoms on the daily, heart palpitations, high heart rate whilst resting and dizziness being the main symptoms, them aside, I’m not finding my PoTS to be playing havoc with my life like my other illnesses at the moment which is obviously a good thing!
I don’t want to speak to soon, but hopefully the concoction of the two medications together are helping my heart begin to act ‘normal’ again.
Can you believe it’s been over a year since I was diagnosed with Diabetes? crazy… right? It feels like time has gone so fast but also feels like I’ve been a diabetic forever.
It’s been quite the journey with my diabetes this year… One minute my glucose levels are in range then 5 minutes later my levels have either dramatically dropped or gone sky high, it’s been very hard trying to get it under control and it’s something myself and my team have been working tirelessly at.
As you’ll know if you read my updates, just after being diagnosed with diabetes, I was started on a tablet called metformin, then, in November last year I was started on a long-acting insulin called Levemir. As the year has gone on, both my metformin and levemir have been upped significant amounts but unfortunately, them alone just weren’t cutting it so in November this year, I was started on a fast acting insulin called NovoRapid. So I’m taking a concoction of all three medications currently.
Let’s hope 2022 is a good year for my Diabetes!
It’s been a wild year when I take a step back to think about it. I went into this year with the hope that I’d be ending it in a better state than I am but that’s just the way the cookie crumbles… right?
Genuinely, I’m doing okay. Asides from everything I’ve mentioned above and the constant array of symptoms I deal with on the daily, I’m doing okay. I won’t lie, it’s taken ALOT for me to get to where I am today, starting counselling again being the main source of help but you know what I’ve realised? I’ve come so blooming far! And you know what, I’m actually proud of myself for getting through my hardest days. And there has been some very hard days this year. It isn’t easy staying positive, especially when you have appointments where your told there’s sod all anyone can do for you and there’s days I feel like I’ve hit rock bottom but I have persevered, I have continued on and I am lucky enough to still here today.
If you’ve made it through today’s post, just know I’m eternally grateful and you deserve a medal haha.
I’m constantly wondering what this next year will have in store for me but whatever it is, I know I’ll battle on no matter how hard it gets. I know you will too! We’ve gotten through 100% of our worst days so far – that’s something to be really proud of.
I can’t thank each and everyone of you enough for your continued support on my journey, I’m so grateful for your words of kindness and encouragement. I certainly wouldn’t have got through half of what I have without the amazing people I’m surrounded by.
I hope 2022 brings you happiness, amazing new opportunities and good health.
Sending you all tons of love & hugs as always,