It is most definitely true what they say that the longer you leave something the harder it is to pick up and get back into. In truth, the last five months have been and continue to be gruelling, the amount of symptoms I am enduring has made it difficult to even function on a “around the house” basis resulting in a monumental amount of neglect to my blog.
When my health becomes unmanageable and many symptoms and systems fire off simultaneously I tend to go into ‘hermit mode’. I withdraw from social contact whether that be through social media or in person. This isn’t because the desire to be around and interact with people has gone its because my physical ability to do so has diminished to such an extent I am on the whole unable. My reserves have gone and the engine is chugging through on empty. This is when the world of chronic illness I am in becomes extremely isolating and lonely.
In my last blog I touched on how hard it can be to manage the constant ebb and flow of symptoms, how you yourself can find it mind boggling how your capabilities from day to day are ever changing and you just don’t know whats around the corner. It is extremely hard to ride the waves and go with the flow. It requires an inordinate amount of mental strength and agility. What about when there are no waves to ride? There is just a giant sinkhole and you’re right in it. You tell yourself “things will go back to there usual level of uncertainty/symptoms in a week, next week, the week after”. Soon a month has passed and you are still in this decline, will it ever end? Two months become five months, you are still declining. This is unchartered territory.
You name it I can guarantee my digestive system and I have been there over the last 10 years. Gastritis, erosive gastritis, H-Pylori, Sibo, abdominal adhesions surgically cut, dysphagia, colonic inertia, heartburn, choking, acid reflux, nausea, severe gastric dysmotility, malabsorption, nutritional deficiencies, diarrhoea, gluten intolerance, extremely limited diet, severe pain, nutritional drinks and some more gross aspects we don’t need to go into further!! The truth is I am never without a stomach symptom, each day is like a lucky dip of any of the above. As well as never being without a symptom my pain is never below a 5 in my digestive system anywhere from my oesophagus to the back door!! When you have been in chronic pain for so long your body can learn to adjust, it almost acclimatises to it and when my pain is at a steady 5 I am much more functional. I used to go through what I called flares whereby my pain would be anything from a 6-10 again with a multitude of the above symptoms and extreme abdominal cramping. Like with anything I never knew when the flares would come they just came and went as they so wished. I spent years trying to identify patterns, foods, triggers to the point it exhausted me and the truth is like anything with EDS it will just come. I could be down and out anything from a day up to two weeks before the usual order of 5 was restored. My body would be wiped out and I’d slowly regain strength.
Around 10 months ago I was noticing I was needing a medication I reserved for “severe flares” more regularly to try and control the pain, it then became I was taking it daily. It then got to the stage where it was having little to no effect at all. I switched it up with a different brand that did the same thing however still found no relief. Soon my pain was a 8-9, I was missing valuable medical appointments and I was struggling to do the things I had worked hard to build up since my neck surgery, I felt the rug was being pulled from under me yet again. I continued to tell myself “this will ease off”. This is quite a common and a much needed pattern of thought in the chronic illness community “this pain will end” to help us get through that moment, that hour, that day. It didn’t end though.
One afternoon in early summer I was eating my lunch and the already 8-9 pain soon became a 20, I didn’t even know pain like that existed. My heart began to race, I started to sweat, the pain was so intense I couldn’t scream, shout or cry. I woke up on the bathroom floor, my lip bleeding and a chip in my bottom tooth. The cramping was causing unimaginable pain. I was sweating yet shivering, I clambered up onto the toilet and down I went again and woke up well…. in a situation shall we say !! This was familiar, I had these types of attacks before 1-2 times a year. They are extremely frightening. The cramping becomes so severe my body basically shuts itself off almost like a system reboot and I faint. I decided to remain on the floor as it was dangerous to be fainting from a seated position to the floor with a fused neck and I valued my teeth!!I lost all my dignity this day. Unlike previous episodes this continued for much longer and with such velocity. The next day I weighed myself and lost the predictable 5 Ibs I always did after these episodes. The usual pattern would be id be tender and more sore than my “usual” for a week or two then I would go back to my “usual” and the weight would come back on.
Five months down the line and the pain is still reaching a 20 daily anything from 0-5 hours after food/liquid intake and sometimes no food is required for it to occur. Although my diet is limited to around 10 foods I have forced myself to eat knowing whats coming thereafter, which is no mean feat yet I have continued to lose weight. My wonderful dietician came round to do a home visit a few months back, she calculated my daily calorie intake and although its not a diet where you would put hoards of weight on it was enough to at least maintain a weight, she also included 2-3 ensure plus drinks at around 400 calories per drink yet I have continued to lose weight. The pain has resulted in the gains I started to make 6 months after my neck surgery to be undone, preventing me from attending valuable medical appointments, become even more deconditioned and I continue to faint when the pain becomes unbearable. I feel weak with overwhelming fatigue grappling with pain so severe its wiping me out. Looking at myself so thin is not easy, I’ve invested in lots of baggy jumpers in a vein attempt to hide the weight loss. The mix of frustration and sadness is crushing. Im eating through such pain, doing everything advised and yet I am still losing weight. My GP has written to my gastro consultant and dietician to try and bring my appointments forward she is concerned, as are we that I have now lost 20% of my body weight and the continual level of pain and fainting from the pain is serious. I am unable to take opiate based medication or anti inflammatories as my stomach lining is like tissue paper and develops sores/bleeds on the medication even with stomach protectors creating another problem so managing pain is very difficult for me like it is for many with EDS. I am on a medication which so far isn’t working however I am working with my doctor to increase it 10 mg every two weeks, if at the maximum dosage it still isn’t managing or dialling down the pain which right now I would settle for I will then have to be weaned off it. With EDS this could be a number of things or it may not have anything to do with my EDS, I don’t really want to speculate other than we don’t like the direction this is going right now.
I would love to say the summer months saw an increase in sun, sand, sea and sangria, I explored new places and made wonderful memories. In my mind I did. In essence the summer months were on the whole spent in my house, at hospital either through A&E or appointments. My dysautonomia/POTS took a big hit during the summer. Looking back I think it was a combination of the uncharted hot weather and the major gastro flare. I was feeling a lot of palpitations for a few days, I didn’t really think much of it at first and tried to increase my fluid and salt intake which wasn’t easy with my stomach. As the days passed I felt worse, I checked my heart rate and found it to be 181 bpm, oh heck. Often I can neglect certain aspects of my health, think it will pass and try and ignore it especially when my stomach was all consuming, it was/is taking over the show. Nick and I made the trip to A&E, once in triage and the nurse saw my heart rate at 162 (sat down) she soon bolted out of the room to get a doctor and I was taken into majors.
I explained about my conditions and my theory was the hot weather combined with dehydration and a gastric flare etc had amplified my POTS. Essentially my blood was pooling in the lower extremities with a weak flow to my heart causing an increase in cardiac output leading to dizziness, breathlessness, tremors, weakness and a super fast heart rate. We agreed on the first line of therapy to be an enormous bag of saline solution, they brought a huge bag and put it on the fastest rate to get it into me quickly. I had blood tests and an ECG.
I did numerous stand up bedside tests and the doctors could not believe what happened to my heart rate just on standing. Around half way through the bag I started to feel a little better tachycardia wise and we repeated the stand up test, my heart rate was now 140 bpm, still ridiculous but we were going in the right direction. They did notice my resting heart rate (lay flat) was low in the 40s which made it quite a dramatic jump when I stood up. I explained I had only been in A&E a few weeks prior with a heart rate of 37. I was placed on a beater blocker for my POTS but as I had a low resting heart rate it was bringing it down too low to worrying levels. I have since been pulled from this medication and have beater blockers now when my heart rate goes too high and stays persistently high for a few hours I have to take one on a ‘as and when basis’.
The last few months have felt like an endless stream of hospital appointments and tests. It has seen us travel to various hospitals for nerve conduction studies, self-catheterisation lessons (now there is a funny story for another time), cardiac appointment, gastro appointments, copious amounts of blood tests, orthopaedic surgeons, orthotics, ENT, Opthamology and pain management. I have also missed important MRI scans, spinal cyst appointments, hydro sessions and much more due to the severity of my pain. I have an enormous amount of appointments ahead of me. Although I am grateful to have the appointments I cannot tell you how much they take out of me with the travel and waiting times etc. I can be out for days after. Sometimes I feel like I am chasing my tail on the never ending merry go round and not getting any further forward in many respects.
It feels like someone has pressed pause, its groundhog day. Im stuck in some kind of purgatory I am unable to get out of. I look enviously on at people living there lives and I feel stuck in time, not moving forward. Living with this level of pain and disability the last 5 months has been one of my biggest challenges to date. There hasn’t been a day I haven’t sobbed my heart out with grief, anger, frustration, guilt, exhaustion, boredom and above all PAIN. I am known to be very stubborn, push myself to the limits and often fight against my body and symptoms however the pain the last 5 months has brought me to my knees and I am fearful. I am not fearful of what is causing the pain, more the thought of will this end.
“Im okay” this phrase will go down in history as “Alis most used phrase”. I find it difficult at times to articulate the pain that EDS brings to my life. The pain is widespread and differing in how it feels from burning pain, shooting pain, dull aches, pressure pain to severe cramping. How can you possibly get people to understand this when on the outside you look okay? It essentially effects everything from my head down to my ankles, muscles, nerves, soft tissue, ligaments, arteries, blood vessels, stomach, spine… yada yada. You can be hit by multiple pains within the same day at the same time, joint dislocations or subluxations, head pressure like your head will combust not to mention the symptoms POTS and dysautonomia bring. Each time you stand up you’re dizzy and almost faint, your heart rate is that of a marathon runner just from sitting to standing, your bladder decides its not working today, you have tremors so bad you keep your hands in your pocket so no-one can see, you’re so fatigued you feel like you’ve got the flu, Im not talking ‘man flu’ I’m talking fully fledged flu. How can you get people to understand when on the whole you look okay? You eat a biscuit and spend the next 4 hours in unbearable pain feeling like you’re dying, faint through it and then are so fatigued you have no choice but to go back to the oh so familiar place-bed. No one knows as it happens behind closed doors. Now…. I could go on and on here, I guess what Im trying to say is it is so hard explaining to people your symptoms, that you’re not ‘better’, that not much has changed since the last time I saw you 5 months ago especially when you look ‘okay’. When people ask me how I am I find it easier to say “Im okay” I almost don’t want to appear negative, pride takes over . I am known to have a sunny disposition and I don’t want to lose that aspect of me as I’ve lost so much already so “okay” slips out. I am slowly realising it is OKAY that you’re NOT OKAY and its OKAY to say that. I felt uncomfortable whilst writing this blog piece feeling it was negative, lacked humour and the usual cheeky joke here and there however it is a true depiction of where I am right now….
“It is perfectly okay to admit that you’re not okay”