Where have I been? Honestly? In bed.
The last month or so has been very difficult for me and unfortunately I have had to take some time away from blogging. As much as I love blogging and updating regularly on my social media pages and in the Chronic Illness Community, I need to think about me and my health.
Anyone who knows me will know how difficult I find this. I hate the idea of feeling like I have let anyone down. I hate the idea that I can’t keep up with my own life. That I can’t be like anyone else and most of all I hate that I can’t be better (at least not right now). Therefore, deciding to take a step back was a difficult decision to make but I knew deep down it was what I needed and what I had to do.
Due to my lack of updates and blogging over the last month or so, I thought I should catch you up. A lot has happened but I’ll try my best to keep it short.
The first weekend of October half term I was a part of an event through a group I belong to and I have been doing these events for the last 4 years or so. I love being able to take part in these events. I was heavily involved in the planning and this took a lot out of me, as did the event itself which was a two-day event. The event went well and I am extremely glad it did. However, the following two weeks I used to rest and recuperate.
I’ll be honest it did knock me back and it definitely felt like more than a few steps back. I had just gotten myself into a routine and I was quite happy with it. However, the stress before the event and the payback after did change things quite a lot for me. I also know that my body doesn’t respond to stress very well. The one thing I can say though is that I do not regret it for a moment. On reflection I would have adapted a few things or managed a few things differently just to help reduce my stress levels, but it’s a learning curve and I did what I felt I needed to do.
As some of you may know I had a much awaited appointment to seem my Gastroenterologist. I had been waiting for this appointment since doing my 24hr pH study (pictured above). This study was a 24hr study to look at the acidity of my stomach acid, as we believed this is what was making me feel so unwell and making me reflux. This study involved a small tube going down my nose and throat into my stomach. However, before I did this study they did another small camera test – which I didn’t know was happening!
This camera allowed the doctors to see how my swallow works, which meant that I had to drink several sips of water and eat some bits of bread. Which for someone with swallowing difficulties was quite difficult! I have been suffering and complain about swallowing difficulties for a long time now however, when I mention this to a doctor they seem to think I’m mad! I struggle to swallow a lot of the time and this can come and go as it pleases. Although I’d say that there is always some sort of struggle or pain. I get feelings of lumps in my throat, I can’t physically swallow, it feels like food and liquid get stuck, it feels like my food gets backed up. Since this started I have struggled to eat, I am struggling with liquids a lot too. I am rarely hungry, I seem to have lost my appetite and when I do eat I become full extremely quickly. As I said no one seemed to listen to this though until I had the camera study.
The letter I received following the test notified me that I had “quite a weak swallow”. I had absolutely no idea what that meant and I had to wait three months to see my doctor. When this appointment finally came round in October I was extremely relieved. When I saw my doctor we discussed how I had been feeling lately. I had been struggling more particularly with liquids and I told her about this.
She then notified me that when testing the acidity in my stomach it was a 7 when it’s supposed to be a 3. It also seems to be worse at night. She then went on to explain my weak swallow. I was told that 20% of the time my food pipe/throat/oesophagus (which ever you’d like to call it) was pre-empting me swallowing my food. This means that the food pipe is closing before I actually swallow. At this point I figured ok, not good but I’m sure there’s something we can do to help but before I could say anything she continued…70% of the time my food pipe is not working as it should. This means that rather than opening and closing to push food/liquid down, each section moves however it likes, it’s not working together. To quote my Gastro doctor “it’s like a disco”. Now if you’ve done the maths by now you may have realised that 20% and 70% makes 90%, meaning that proper use of my food pipe is at 10%.
My official diagnosis? Oesophageal Dysmotility and Dysphagia.
I have to say that I was pleased that someone finally believed me and took me seriously. I knew this wasn’t good but I figured now there’s a diagnosis, they will be able to help. Well, you’d think I’d have learnt by now wouldn’t you? There is no cure.
There is only one option that may provide some relief, however, it doesn’t work for most people and comes relatively high risk. That option being a blood pressure medication. As I have never had a real problem with my blood pressure the doctor and I agreed I would give it a go. You may be confused why this choice of medication, if so don’t worry so was I. The blood pressure medication can help relax the muscles in my throat which should also prevent any spasms that happen in the throat, allowing me to swallow easier.
So, I awaited my appointment letter to be able to check my blood pressure with my GP surgery and to pick up the new medication. More to follow....
I have decided to split this blog into two as I didn’t want it to be too long. Therefore, please excuse the abrupt end and there will be another blog to follow shortly. Thank you for your patience and understanding during this time and please whether you’re a spoonie or not, remember to take time out for yourself and that you can’t do everything!