A Downward Spiral….

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. 

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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.

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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”

 

 

 

Not so “Humerus”

What better way to start a day than with a 3 am blog post, I really do need to start tackling this sleep situation. It’s a shame I can’t work right now or I’d make a fortune on night shifts!!!! 

This past week has been refreshingly and unusually quiet and steady on the appointment front however high on the symptom front. The start of the week saw us travel over to Wrightington Orthopaedic hospital to see my shoulder surgeon, well a member of his team. 

I’ve been having increasing problems with my right shoulder. Any kind of movement where my arm is raised above waist height, infront of me or even doing quite simple tasks the rhomboid muscle swells so big I lose my shoulder blade to the swelling along with severe nerve pain across my upper back. The pain at times has reduced me to tears from burning/shooting nerve pain to a dull constant ache around the whole shoulder blade and upper back. Its extremely debilitating and impinging on my ability to function with the most basic of tasks.  Writing this blog for instance is undertaken in 10 minute stints, using my bed table, pillows supporting my neck/shoulders, wrist splints, neck brace and KT tape around the shoulder oh and occasionally sporting my migraine cap….its quite the look, I hope to feature in Vogue very soon!!

Around 18 months ago I had an MRI arthrogram, a test to study a joint. A needle was placed in the shoulder joint, which sat idle for a while as they injected contrast guided by an x-ray. At the time I was being tested for a lidocaine (aneasethic) allergy so any numbing agent was off the table, the doctor thought I was insane going ahead without anaesthetic but to be honest although not something “enjoyable” it wasn’t truly painful more an intense pressure within the joint. Once the contrast was injected a 45 minute MRI ensued followed by a POTs faint from laying down a while and standing up too quickly. The arthrogram revealed a rotator cuff and labral tear. At this time my main shoulder Symptoms were constant pain waking me up during the night particularly around the joint itself and at the front of the shoulder aggravated by lifting my arm above my head, reaching for things, typing, holding my phone…. basically anything involving the use of my shoulder, even pain at rest, weakness and lots of lovely cracking, my shoulder sounded like a bowl of coco pops pretty much all the time.

The shoulder is quite a complex joint, it is one of the most mobile joints in the human body and is mechanically quite poorly made, whoever designed such a joint needs sacking!! The rotator cuff is a group of four muscles that come together as tendons to form a covering around the head of the humerus. Your arm is kept in your shoulder socket by the rotator cuff so they are quite an important set of muscles. The labrum is a rim of soft tissue that makes the shoulder socket more like a cup by turning it into a deeper socket that holds to fit your humerus, your rotaor cuff then connects your humerus to your scapula. *My knowledge of the shoulder joint ends here* Basically its one big happy family of muscles, ligaments, tendons and bone that work together however with me its a seemingly disjointed, malfunctioning family that no longer communicates with each other. A labral tear can make your shoulder much less stable.

Knowing I already had the above issues we trotted off to inform the surgeon of a relatively new issue that has come about in the last 3 months with my shoulder blade. I discussed my symptoms with the surgeon and then followed an examination.  After the examination he asked me to lean against the wall with my arms in front of me and push into the wall a bit like a standing press up.  He then had me stand in front of him and raise my arms above my head (pain) you could hear and see the shoulder catching.  He then firmly held my shoulder blades and repeated the exercise with MUCH less pain around the blade. He said that as well as the rotator cuff and labral tear I have something called scapular winging.  Essentially the scapula (shoulder blade) is the largest bone of the shoulder and has the greatest number of muscles attached to it. Scapula winging can be caused by dysfunction and injury within the muscles themselves or the nerves that supply the muscles.  We discussed treatment options as he could tell I am finding the pain unbearable and it is hugely impinging the most basic of tasks on a daily basis. We discussed surgery as an option however the success rate of shoulder surgery on patients with EDS is actually pretty poor, this isn’t the first time I had heard this and the last thing I want is to be in and out of surgeries that continue to fail. We discussed pain relief as this is a challenge for me due to my stomach so my pain is rarely under control and medicated well as it causes a cascade of other symptoms. We decided to continue with the plan of hydrotherapy and get that booked asap and try and work on building and balancing the muscles to figure out if this is caused by a muscle imbalance/weakness/tear or if the nerve supplying the muscle is compressed which interestingly stems from the scalene muscles in the neck which are always swollen with me.  A follow up appointment for 3 months is planned of which the situation will be assessed again.

I left a little deflated and admittedly had a good cry when I got home.  The last few years so many aspects of my health are declining with new issues arising that we are unable to get on top of, as another issue or symptom is preventing me.  My head pain reduces my ability to function enormously and undertake physiotherapy so we are now also in a deconditioning cycle to add insult to injury.  Its very overwhelming when so many aspects of your health are going wrong, you have to try and get some semblance of order of importance as everything simply cannot be tackled at once.  When I sit and reflect on the inordinate amount of difficulties my body is facing I feel like I am sinking at times, there is no quick fixes which brings me great frustration and despair but we must add another layer to the life jacket and stay afloat as best we can although in truth I feel like I’m clinging on for dear life to an inflatable flamingo with a puncture!!

The rest of the week was spent organising my appointments over the coming months.  I have quite a schedule coming up. My appointment with the urology nurses to learn self catheterisation and self dilation arrived however had to be rearranged as it fell a few days after my iron infusion (due Friday) of which I feel terrible after and the last thing I would feel able for is a 2 hour lesson in poking various devices around!! We have booked this for July.  My Physio and I kept missing each other so I’m hoping we catch each other this week to get hydrotherapy booked, this won’t be for at least a further 3 weeks due to other appointments scheduled.

I received a letter from my neurologist regarding what happened with my little ticker whilst on the propranolol. He wrote asking me to start back on the propranolol this time instead of 80 mg slow release start on 10 mg normal release x3 a day building the dose up every few weeks however before each dose increment increase get an ECG to check on the old ticker then if the same symptoms happen again he will get a 24 hour ECG arranged to monitor what my heart rate is doing on the medication.  He has also booked me in for an up to date brain MRI with contrast so I am just awaiting that appointment.  I was a little disheartened regarding the medication as not only do I not want a repeat performance of the 80mg saga I also don’t want to push through side effects for weeks/months to then reach the higher dosage levels which are required to medicate the problem for said saga to occur again. We can but try, perhaps gradually increasing the dosage at a steady rate will give my body ample time to adjust to it. Who knows….

This week we are off to see my lovely orthoptist, to see how I am progressing with my vision therapy.  This lady would brighten up anyones day, she is such a jolly and fun lady whilst being super at her job. Friday is iron infusion day.  Im a little apprehensive about this if I’m honest. Ive only had one or two before many years ago and this one is at a different hospital so I’m unsure if you are provided with a bed or if its a chair as Im still struggling to be upright for long periods and the infusion takes around 6/7 hours.  I have a little anxiety about potential reactions, CosmoFer infusions can cause quite serious  reactions in people however off memory its done in an extremely controlled manner with a test dose given at a slow rate then observation over an hour of your blood pressure, heart rate and any symptoms you start to have if no serious reaction has occurred they will start you on the full infusions building the speed up over the day whilst regularly checking your SATS. I didn’t use to have these anxieties about “serious reactions” until I reacted at the dentist many years ago to the anaesthetic, I could not breath, developed a swollen neck with a rash, my fingers started to turn white and an ambulance was called.  Needless to say it has most definitely left a mark on me and has produced an anxiety that was never there before of “breathing difficulty” type reactions. I am much better now at managing this anxiety and rationalising the situation, not giving into it and avoiding treatments because of it, well……… perhaps the dentist a little!! That might be due to the huge bill that follows each visit!! Going off my previous infusions I have felt quite unwell during them with nausea, stomach cramps and shivering and for a few days after them with what feels like a dose of flu, headaches, fatigue, nausea and stomach cramping.  This is quite common after this type of infusion though and I’m just trying to look past all that and fast forward to two weeks where hopefully I will feel an increase in my energy levels, reduction in fatigue and breathlessness which is only a POSITIVE. Sometimes we just have to push through tests and treatments for the greater good.

As I’m not feeling my best, this week I plan to rest up and reserve my limited energy for the appointments, you’d be surprised just how fatigued I get after hospital appointments.  Us chronically ill folk can often miss important appointments which are designed to help us because we can be too unwell to attend, oh the irony!! Which leads me onto my next blog post I’m working on “Consistently inconsistent”……

Thank you for reading and I hope you all have a lovely and positive start to your week wherever you may be.

 

Health Update- Part 3 (The Finale)

Congratulations…..get your cap and gowns as you’ve all graduated from the “Ali’s crash course of health issues”. This will be my last health update post and the aim from now on will be to update weekly/fortnightly on what is happening, how I’m feeling and run alongside that some hot topics I am itching to write about. Grab yourself a celebratory tipple for the final instalment. 

Gastro-

My gastro system was one of the first issues I had going back 10 plus years and we went round a merry go round of IBS, Crohns disease and many more illnesses over the course of that time having more investigations than I care to think about. You can read more about this in one of my earlier blogs “A gut feeling”.  Once I was referred to a neuro-gastroenterologist I started to have the right investigations and gradually the pieces of the puzzle started to fit together. Many people with EDS have gastric dysmotility this can be in the form of too fast or too slow transit or it can swing between the two. Both conditions share some similar symptoms but there are marked differences between them. One thing they both have in common is how debilitating they can be for the patient. 

A few years back I had exploratory surgery for a mystery “lump” during the surgery adhesions were found which are bands of tissue that were wrapped around my lower bowel. I remember the relief thinking we had finally found the cause, this tissue was cut and removed however I was told the possibility of this tissue growing back was high and in fact the more times you go in and cut the more scar tissue forms and the worse the problem becomes, great stuff!! Shortly ensued a colonoscopy and barium studies.

 My most recent “bowel” related test was something called a tracer study under nuclear medicine. I had to take a set of pills over the course of a few days, each pill dissolved releasing various shapes into my digestive tract which are highlighted on an x-ray. On day 7 I was scanned with the aim of the game being 80% of the markers to have packed up and gone down south, I’m clearly a Northern lass through and through as you will see!! The follow up with my gastro came who said the good news was the markers weren’t stopping at a particular junction which meant there was no need to remove a particular section of my bowel that had nerve death. I thought I was home and dry I turned to my mum relieved about this however I soon noticed the expression on his face and he explained that the entire bowel seemed to not be as it should even parts of my small intestine and it was a worry that this related to the nerves and muscles ability to propel contents along. He said if this was a case of ‘simple constipation’ the transit time is usually normal and most markers would have left with only a few residual in the sigmoid colon.  Below are x-rays of my small and large intestine, the images were clearer on my consultants computer whereby he could fade some of the white out for clarity particularly at the bottom of picture 1.  Off memory 59 remained from 72.

As you can see there is quite the shape game going on here and unfortunately they are dotted throughout which signifies an issue with the nerves and muscles throughout the large bowel and a portion of the small bowel. This is called colonic Inertia. The pain this causes at times is unmanageable, all of our systems propel food in what should be a nice rhythmic manner however mine is out of sync, completely un-coordinated and poor functioning which leads to such extreme cramping at times I have passed out not long after eating. The pain can fluctuate throughout the day but never leaves.  My diet is extremely limited and standard laxatives just sit in my bowel causing further cramping instead of doing the job they are aimed to do.  To try and relieve the pain of the cramping I am unable to take opiates as they feed into the problem further as they slow the bowel down and they don’t stay down long due to inflammation of my stomach lining. I was assigned a bowel function nurse and currently experimenting as and when with a medication called linaclotide, enemas, self bowel massage (funnily enough I can’t find a beauty establishment that lists this in there treatments) and some home remedies. There have been a fair few trips to hospital over the years with suspected bowel blockages.

A radioactive egg and jam sandwich came next, yes you hear me correct!! It was certainly not gourmet. This test was to study the motility of my upper stomach.  I explained to my consultant some days I feel my food is sat in my stomach for hours and I can only manage a few bites through nausea and feeling full and other days it feels its tipping out of my stomach too quickly and I get shaky, nauseas, low blood sugar and some other symptoms I will kindly leave out. Once I managed to get the sandwich down which is no mean feat I can assure you I was scanned at regular intervals. The radioactive substance within the sandwich is highlighted so they can trace its location in your system. On this day the result showed rapid gastric emptying, essentially my food is tipping out of my upper stomach quicker than it should leading to nausea, sweating, cramping, low blood sugar and not really feeling you have eaten shortly after a meal. I know there are times when my stomach is extremely slow and this would be slow gastric emptying of which I feel sick and I can’t actually get any food down at all of which I have nutritional drinks as a back up. It basically swings between the two but on this day it showed rapid.  As you can imagine its quite hard to treat a stomach thats tipping too quickly and a bowel and small intestine that are on a permanent vacation as the two contradict each other.

Since surgery I have had problems with my swallow, my food is sticking and I can either get it down with fluids or its back up we go. I had a barium swallow which showed some pooling of barium but we have not yet bottomed why this is happening daily. Thankfully I am not aspirating my food which is the real danger however none the less its extremely unpleasant and can be frightening. Due to NHS cutbacks my consultant has had one of his two clinics taken off him so he now has to cram two clinics in one so I don’t get to see him until October (insert frustrated face).

Iron Deficiencies-

I have difficulties with malabsorption of nutrients combined with a very limited diet I often don’t get enough of what I require. I had visited my GP some time ago reporting I felt much more tired than usual, breathless and pale. She ran some bloods which came back as my ferritin (iron stores) were extremely low. I have been here before and recognised the feelings. I have tried many iron supplements over the years and they do not raise my levels, they cause a lot of side effects and are now a contraindication due to my bowel difficulties. My ferritin has dropped further since the initial blood test and an iron infusion (cosmofer) has been arranged for late next week which will take around 6 hours if all goes well, ill get some movies downloaded for that one!!  Ive had one before many years ago and I do tend to feel quite unwell during and a few days after them but when this lifts I feel I have much more energy. Essentially I’m running on fumes at the moment so hopefully topping the tank up will make a positive difference.

Years ago I was placed on B12 injections after reporting the same symptoms as above in addition pins and needles and numbness. My B12 was tested and was rock bottom, I got quite unwell at the time as it was not reported properly by the hospital initially so it went untreated. I was commenced on B12 injections and have them 3 monthly.  As part of a new initiative my GPs practice are training patients or partner/family to do the injections. My partner and I went down for the training with the lovely nurse.  I didn’t think I would have a problem doing this injection myself and drew the fluid up, changed the needles and when it came to putting it in at a 90 degree angle (all the way in I might add) I just couldn’t push it in. I was surprised as I am not in the slightest fearful of needles.  My lovely partner stepped in and was shown how to give it in my arm. The injection is uncomfortable as it has to penetrate the muscle and not hit the tissue so it is a very deep injection and the substance itself stings but it is more than manageable and usually only lasts for a few minutes. My partner did a sterling Job and said he could not have done it to himself either but I have to be nice all the time now as he has the needles 🙂 The lovely nurse said we are welcome to come back anytime for a refresher which we probably will do, I will give it another go myself as I don’t like to be defeated!! Below is the sharps bin, B12 and needles, to be fair you can see why I struggled pushing that needle all the way in myself. My arms are so thin I’m surprised it didn’t come out the other side!!

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ENT-

I see my ENT consultant in a month to discuss setting  a date for my deviated septum surgery. I was on the fence whether to have this surgery or not, to be honest it would be nice to get my right nostril out of retirement and to alleviate the chronic sinusitis it causes as its no fun really. Ive recently been having problems with my ears which will be added to the list to discuss during the appointment.

Eyes-

I have Posterior vitreous detachment of both eyes meaning the membrane has separated from the retina. Its quite a common condition but usually in those over 65 not 33.  On my left eye the membrane has fully come away and on the right its hanging on for dear life and half pulled away causing floaters, flashes of light and sometimes it feels like I am looking through a cobweb, its extremely annoying however not painful.  I have to be careful for any sudden changes and have to be checked out by the eye hospital due to the possibility of retinal detachment which is a serious condition.

My vision is at times blurred, double but more so a loss of focus and clarity.  I am under vision therapy at present trying to get the brain and eye to communicate better however we are not sure if this is related to my head/brain and CSF problems which can cause similar symptoms so it feels a bit of a guessing game at the moment as to what is actually going on.  It is like this with many aspects of my health right now and many conditions mimic each other symptom wise so to pin down the origin is proving a challenge, a frustrating and tedious change at that.

I have dry eyes which are extremely annoying!!  They itch, burn, sting and feel like the gritters have been doing a day shift pretty much 24/7. I use eye drops recommended from my eye doctor about x8 a day and use warm heated pads on my eyes to add moisture to them.

There are MANY other things going on with my health, only yesterday I was told I had yet another issue which I will talk about in my next post. I just wanted to get the bulk of my current situations up to date for fluidity and now I am good to go.  As you can see there is an awful lot going with my body but just how does it feel physically, mentally and emotionally, just what goes on at the appointments, how much advocating has to take place, what mistakes are made, is there joined up care, how much support is available for those living with a chronic illness, what judgments are made about those living with invisible illness….these are just some of the topics I will be writing about over the coming weeks. 

*I receive many e-mails from my blog from patients and families which is lovely, if there are any particular topics you would like me to write about or hear more about please get in touch either via the comments section or you can e-mail me through the contact link via the menu*

 

Turners tours…….

Firstly I must apologise for not updating my blog sooner, since being back home we’ve been on tour…..of local hospitals *sighs*.

So……how am I feeling post fusion wise??? Well in terms of the surgery recovery I am doing very well, I think. I seem to have healed beautifully, the scar is very tidy and my undercut is starting to grow out to a more disheveled/shabby kind of look. I am in the process of weaning myself out of the brace and really just listening to my body during this process. The fact I can now carry the weight of my own head is simply amazing, I will never take that for granted. I’d say I manage about an hour before the real spasms kick in of which I either put the brace back on for a rest or lay flat and alternate heat and ice. Today I actually had my first physiotherapy appointment since surgery, it was nice to see my physiotherapist again, she is lovely. We are taking things very slowly and starting off with some light isometric exercises which strengthen the neck muscles, I will also be doing some extremely light core strength exercises. My body has become very deconditioned over the last few years and my muscle tone and control is poor but with EDS its always a case of starting right from the beginning and working our way up at a slow pace so for the next month it will be light isometric exercises and some stomach in/bottom squeezes lay flat. And on top of that some light daily massage (sadly the NHS don’t provide a masseuse) to loosen up the trigger points as my neck and shoulders are very tight since fusion partly due to the magnitude of the surgery and partly because of the limited movement I have now.

In ten days I will be having my post op three month x-ray to ensure nothing has worked loose and to see if the bone has started to grow. I’m quite nervous for this actually as the aim is for my own bone to grow over time for the surgery to be a success.

So many people have been asking what improvements I have noticed since surgery, this can be quite a tricky question to answer one being as it’s still relatively early days and also I have multiple chronic conditions that all feed into each other and give off an array of symptoms and fluctuate in nature daily. So far the very fact I can hold my head up independently again without a brace or holding it myself with my hands is AMAZING. I have noticed an improvement with my vertigo, tinnitus, neck pain and bladder issues which is very positive. I’d say the biggest blow so far is that the debilitating headaches I’ve had for 2.5 years daily still remain as well as talking aggravating the headaches further and for anyone that knows me personally knows how much I LOVE to talk!!! This has been one of the hardest elements for me, being muted 80% of the day just to try and keep my headaches at a medium/low level. I also struggle with sounds around me it’s like sensory overload (very bizarre). Myself and Nick are off to London in the New year to see a leading professor who specialises in headache disorders particularly in EDS so I am very much looking forward to meeting this expert. Headaches and EDS are very complex as there can be so many different causes from migraine, blood vessel problems all the way through to high/low brain pressure and anything in-between. I shall keep you all updated how that appointment goes. Before I banged my head 2.5 years ago and this cascade of symptoms came about I had never suffered from headaches in my life and they are so very hard to articulate as they are not like your average headache, or hangover headache (I wish) the pain moves all around my head and face, changing in intensity going from severe pulsating pain to knife like pain to pressure. Very odd. Very unpleasant. Very debilitating. This is the symptom that has stopped me in my tracks the past few years.

Now…..the rest of my body!! I have completed a diagram labelling a body of the various organs/joints affected for a clinician and thought I would share it on my blog. Labelling the body doesn’t really give insight into what it’s like living with each and every symptom but I thought it was useful none the less. *Get your magnifying glass out or use our zoom*

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Since being back my parents and I have toured the hospitals catching up with all my consultants. My parents…. literally the best humans on earth.

Turner’s Tour-

Tour 1

Myself and Nick went to see the pain team. We spoke with a nice lady and discussed my conditions and the impact they have on my life. As well as controlling my pain one of my big issues is coming to terms with my conditions and how my life isn’t what I expected. There are many aspects of this for me personally that I struggle with and I’ve decided I’m going to open up more in my next blog post about this topic I’ve quietly struggled with the last few years.

Tour 2-

I have seen my GP a few times to catch up with her post surgery and to discuss my worsening POTS symptoms as I’m not due to see my cardiologist until next year. It’s quite common for POTs to go crazy after major surgery and inactivity so I’m not surprised. My heart rate is spiking quite high but at present it’s coming back down on its own within a reasonable time frame of which I am thankful as there have been times when it’s landed me in A&E when it refuses to go below 150. My other issues are the inability to stand for longer than 10 minutes without intense blood pooling in my legs and low blood pressure. I am soon to start a medication to increase my blood pressure and widen the blood vessels, this tablet doesn’t come without side effects and possible complications so I will need to check in with my GP regularly for my blood pressure to be taken as it can cause hypertension and effect my heart rate. I also had some bloods taken and my 3 monthly b12 jab. I’m so fortunate to have a lovely practice with lovely doctors, nurses and staff.

Tour 3– Ear, nose and throat appointment. We discussed the surgery I require for a severely deviated septum which I’ve had for a long time however it has got progressively worse to the point my right nostril is now out of order. Given I will need to be intubated and require a bit of extension of my neck we agreed to catch up again in January to book a date for surgery hopefully middle of next year as I need a break but it maybe sooner.

Tour 4- The dietician came to my house, so I call this half a tour. She was extremely pleased with the weight I have gained but understands how it can fluctuate with my gastro symptoms. Although my diet only consists of around 10 foods she was happy I’m getting what I need to sustain myself and recommend i take some vitamins also. We have a plan of nutritional drinks that are easier to digest for when my weight dips. I have put back on the stone I lost after surgery which is fantastic news.

Tour 5– I saw my gastro as I am struggling immensely as always with my stomach/bowel. My gastro system has plagued me for around 10 years and I suffer so much because of it. Firstly we addressed how my food has been sticking since surgery and he was a little
Concerned if it was nerve related. He booked me in for a barium swallow. I have also had intractable heartburn/reflux/chest/back pain the last 6 weeks which isn’t responding to potent acid reducing drugs. My gastro wanted to do an endoscopy however I am unable to tolerate them without being put totally to sleep which he felt so soon after surgery wasn’t advisable but we are going to discuss this further as the symptoms are debilitating. Way back I had a study called a sitzmark study which involved swallowing various pills over a few days, each pill contained different shapes and then being x-rayed to see where the shapes were. The majority of the shapes are meant to have left the body however with me 90% remained, I’ll never forget when he turned the screen round to show mum and I and my little intestine and colon was just swimming with little triangles, circles and rectangles, I didn’t know if it was the shape game perfection from the 80’s I was looking at!!!! This shows a condition called colonic inertia, basically the nerves and muscles in my bowel don’t fire off like they should it’s a step up from good old constipation and the worst thing for it is high fibre foods as they cause unbearable cramping, broccoli is the devil!! We discussed how I seem to fluctuate between dumping syndrome (classic name) whereby I eat and within 30 minutes I am sweating, pass out and find myself on the thrown (too much information?) and within an hour or so have low blood sugar like I haven’t eaten in days or extremely slow stomach transit whereby my food sits in my stomach for hours and hours causing indigestion/ nausea and bloating, couple that with my snail like colon and it’s HELL. The nerves in my stomach just misfire and the muscles are uncoordinated so I often pass out with the level of cramping and pain. I am being sent for a gastric emptying study in the new year to chow on a radioactive egg and jam butty to see the speed food is leaving my stomach.

Tour 6- Barium swallow day. I went and swallowed some chalky paint which tasted of refreshers and stood on some kind of contraption whilst x-rays were taken to assess my swallow. Sadly due to fusion I couldn’t complete the final part to look for reflux and hernias as it involves getting my head into some rather funky positions I couldn’t do. The final part of the test with me being gluten free involved me eating a mince pie top I brought with me coated in barium (how to kill a good mince pie right there) !! I chewed it to death to get it down, more than I would normally as I wasn’t allowed water to send it on it’s way and didn’t want to choke.

Tour 7- caught up with my lovely physio who has put me on a very light post fusion programme.

We have speech and language, pain clinic x2 and x-rays before Turners tours finally finishes 28th December for the year before resuming in January which is booking up fast, magical mystery tour has nothing on us.

 
In other news-

During all of the appointments and symptoms I have tried to get back to making the odd item. It’s very important for me to achieve something with my day for my pride, my mind and my self worth. Although now everything has to be adapted and done in stages (gone are the days of spending 10 hours behind a sewing machine) everything, due to pain has to be undertaken in 20 minute stints. I’m still trying to learn this pacing business. However I am super proud of the few little things I’ve made and achieved, it really is the little things at the moment that keep you going.

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I thought I would finish off with a quote that I read daily at present through the trials of recovery and EDS.  I think its ideal for anyone who might be feeling overwhelmed right now, for whatever reason.

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The Invisibility War

“You look really well” those four words again, the cynicism builds within me.
‘Do they think I’m making this up or something? I may look okay but I certainly don’t feel it or maybe they are just being nice”.

 
In society, there is a mainstream idea of what illness should look like, how long it should last for and expectations of recovery, when you will suddenly become ‘well’ again. Unfortunately, for those living with chronic illnesses we will never meet those expectations, we may fluctuate within them, learn new ways of managing our conditions, go into ‘remission’, our symptoms may wax and wane but we will not get ‘well’.

 
Many chronic illnesses whether it be EDS, depression, anxiety, lupus or Crohns disease, to name but a few can be invisible either on the most part, on days, weeks or even months. This invisibility can make it extremely difficult for even those close to us to be able to relate, acknowledge, understand and empathise with our individual daily battles with illness. It can be hard for people to relate when something isn’t always apparent or visual. However just because you are unable to see it does not mean it is not there, it’s very real.

 
It is estimated that 69% of those with invisible illnesses were told their symptoms were down to anxiety or not even believed, before eventual diagnosis. Many people with invisible illnesses have spent years being disbelieved, poor treatment and care so you can see how the words of others can have such a significant impact on their wellbeing.

 
Over the years, I became somewhat a master of hiding behind my pain. I did not have a name for all the symptoms I was enduring, I could tell at times certain people doubted the validity of my symptoms and suffering. It was somewhat easier to hide behind a smile than attempt to explain just how unwell I was feeling when overall physically, I looked fine. I even took this stance often with certain doctors or consultants as I felt their willingness to help was not there, they could not find the cause of my problems therefore to them they did not exist or exist in the capacity I presented to them.

 
Since my diagnosis’s my attitude has changed to a certain extent, I am much more open about how I feel both physically and emotionally, I no longer actively hide my symptoms behind a smile, I choose too at times. Validation of a diagnosis can help enormously in the ‘believing’ stakes but not necessarily in the ‘understanding’ stakes. Living with a chronic illness is unpredictable, literally not knowing what is coming hour by hour, even minute by minute. It is a hard task constantly adjusting to this unpredictability. What we can do one day we may not be able to do the next day or even again that same day which those without illness can, not always, but can find hard to comprehend. If we have one activity that day (usually hospital) everything pivots around that. We could be seen out ‘looking well’ but it’s not seen that to enable us to make that outing we had to stay in bed until it was time to leave, we couldn’t possibly wash our hair too and afterwards when we get to our homes we crumble with pain and symptoms, all behind closed doors. When you’re seen out, it’s just a snippet, a snap shot, a moment, not your actual reality.

 

In life, we only see what we want to see and only let people see what you want them to see. We often live our lives through many different faces and smiles that may not necessarily reflect how we are feeling. That good old British stiff upper lip!!!

I am ‘a smiler’ it’s my way of coping, almost like my default mode. I don’t want the conditions to define me, I want to hold onto as much of ‘Ali’ as I can. I will often feel terrible but put my make-up on and some nice clothes just to sit in my house for a feeling of normality and to break up the horrendous ‘my heads falling off hobo look’ of late!! I may take a ‘selfie’, I may post on social media, you may see me smiling however don’t be fooled by the smile, it does not mean I am healthy and miraculously cured. It means I am happy in that moment or I am trying my best.

 
It’s strange that we all, myself included on the most part relate more to the visuals in life. Some days my condition can be very visual, will I let you see that? On the most part, no. I’m not ashamed of my illnesses but I still feel uncomfortable allowing people to see me look so sick, on these days, moments, weeks, I will stay in. I could be in numerous braces to steady my joints after dislocating, my neck brace on, using my walking stick or wheel chair, underneath the make-up looking like I’ve done 12 rounds with Mike Tyson with black eyes from brainstem compression, black and blue with bruises, resembling a real-life mummy wrapped in KT tape and on those days, I find I don’t actively talk about my symptoms as much because they are VISIBLE, often speaking for themselves. Does this mean the days I am not in a wrist brace, means I am pain free? If only, the pains in my wrist are constant it just means on the day I’ve worn the brace the bones have disconnected and its dislocated so I need to rest to it.

 
I would say for anyone living with chronic illness, whether invisible or not to go easy on yourselves. Do not feel you need to justify your pain or your symptoms. What you are experiencing is real. People will never fully understand, even people with the same conditions as you, as we all experience pain differently, we all have different symptoms and coping mechanisms. Our lives are already filled with challenges, we may also be in pain from a life un-lived or lived how we had not imagined so be kind to yourselves always.

 

It may at times be invisible but that does not mean it’s not there. See into the invisibility and help make our invisible, visible.

 

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