It’s been a strange old week to put it mildly! The weeks seem to whizz by with very little happening in them. Some days I have to check my phone in the morning just to remember what day or even month we are in. How on earth is it June already when it feels like the lock-down only started a few weeks ago ( March 23rd!). 

Last Thursday I ended up in agony with my back, it has been playing up on and off since around the 10th May. I have what is known as a Spondylolisthesis, which is where my L5 vertebrae is slipping over my S1. I was offered a spinal fusion in 2014 and I declined on the basis most days it was fine and I could manage the occasional flare ups. I started physiotherapy to strengthen my core to help support my spine and all was going really well. I had the odd twinge that usually subsided with the use of anti inflammatory medication and some ultrasound treatments. I carried on like this quite happily until around the 10th May.

I had been doing some sewing and as I packed up for the day, I went to get up from the table and there was no power in either of my legs. Basically nothing happened. Any normal person would have probably freaked out but this kind of thing has been happening to me for years so I just sat there for a bit figuring out my next move. I tried again and I could get up out of the seat but my back was now in spasm, with pain shooting down both my legs and I couldn’t stand up straight. I was in such a bad way that I actually rang the doctors there and then. Most times I will manage my own condition for as long as possible before getting help. I knew that this wasn’t going to get any better without intervention. The doctor prescribed me diazepam and to avoid being seated for long without moving. I stayed off my sewing machine for a few days and did as I was told. Whilst on the diazepam it was pretty impossible to do anything anyway as I couldn’t think straight. 

My back slowly improved but I was getting stuck if I bent forward at all, even a tiny bit. I couldn’t carry anything heavier than a full mug of tea, even if it was in a bag over my shoulder as that also caused me pain. I was struggling to get out of bed, once flat on my back I was like an upturned tortoise struggling to right myself and I was really struggling to get out of chairs. No position was comfortable, anything pressing on my spine like a waist band even lightly was causing me pain. Then all of a sudden it really eased up so I started to do some very light Pilates exercises, very carefully. Within 4 days my back was as bad if not worse than it had been in March. I soldiered on through Thursday but by the next day the pain was wearing me down and I had to ring the doctors surgery.

This is where the fun really began! Due to Covid-19 they had now implemented a system where you could no longer request to speak to a gp, you had to fill in a form for an E-Consult. The problem was every time I told the truth in these boxes about how bad the pain was it kept telling me I needed to ring 111 and ask for advice. This was ridiculous as all I needed was some Naproxen and some diazepam. I know that the algorithm was picking up on Cauda Equina Syndrome as a possibility due to the level of pain I was in. However having had a bad back since the age of 16 I know what the red flags are of this syndrome and I didn’t have any. If I did I wouldn’t be ringing 111 but 999 as I have always been instructed to do so by the numerous doctors I had seen over the years. I know the system can’t be perfect, the issue is when you are dealing with a “professional” patient who has managed their conditions for years it becomes tedious dealing with machines that just don’t get that and look for red flags.

I had to keep going back a page and adjusting my answers to stop it repeatedly telling me to contact 111. Now please don’t do this yourselves, I am not advocating anyone lies on their e-consult form. Tell the truth and follow the advice of the professionals not a blogger. I must have written close to 2000 words as each box had the ability to take 500 characters and I managed that on most! When I eventually managed to get it to agree to allow a gp to contact me I was left with the message that a doctor may not contact me until 18.30 on the following Monday. I was filling the form in on Friday 2pm……..WTAF? 

Clearly the doctors that had access to my form realised that I needed help before then and to be fair I was contacted less than an hour later. I was in tears at the prospect of not being “seen” until Monday and had I had no contact from a gp by close of trade I would have ended up ringing 111. The doctor I spoke to was lovely, he had clearly read all the information that I had given him, that I had tried everything I could at home and it wasn’t working. He also gave me a quick question about Cauda Equina – they always ask that you haven’t lost control of your bladder or bowels or haven’t gone numb in the genital / anal area. I said if I had I would have called 999 and not called you, he laughed and said I can see from your notes you have been dealing with serious spine issues for 30 years ( and that made me feel fucking ancient cheers!) and you have a sensible head on your shoulders. I told him the only medication that touched it since this kicked off in May had been aspirin and the diazepam to get the muscles out of spasm. I asked for Naproxen and a few diazepam to use when it got bad. He was happy to write a prescription for both.

It took 4 doses of naproxen ( 2 full days) to get the pain under control and now it is better than it has been in ages. Hubby has been giving me some ultrasound treatments. I have been very careful not to lift anything heavier than a cup and to ensure that I don’t remain static for too long. I am hoping that things stay this way. By the end of each day I end up with a little pain that gets a bit uncomfortable but nothing like what it was last Friday when I didn’t know what to do with myself. When I sit on the sofa I sit on my special cushion. I think I am just going to have to be very careful for a while until this settles down. The doctor I spoke to last week felt that my spondylolisthesis had probably shifted forward and I would concur. For months I have had the feeling that my sway back was getting more severe. The middle of my spine feels like it is being pulled forward and my pelvis has just felt out of alignment. That day back in May it probably just moved a little further again and has been pressing on the nerve roots.

My mum asked if I could feel a step in my spine but at the time my spine was so sore I couldn’t have anyone touching it without gasping in pain. When Mr Myasthenia kid was doing my ultrasound treatments I was constantly having to ask him not to put any weight onto the probe as my back was just so sore I couldn’t cope with the added pressure. I actually can’t remember a time when my spine has been that bad. My goodness I was terrified that I was going to end up having emergency surgery! I am so pleased that it has improved so significantly.

I’ve always said I had a bad back but that really didn’t describe what it was like at all. Every movement, even wiping my own bum was causing me to cry out . I have since done a lot of reading about Spondylolisthesis and so much makes sense now. Why my buttock muscles always feel tight and sore, the pain on my iliac crests where it feels like the ligaments and tendons are tearing. It is all being caused by the movement of the vertebrae in my spine. It probably also accounts for my bouts of  Piriformis Syndrome which in the last 6 months I have had some awful flare ups of.

So for the time being I have avoided hospital and a spinal fusion but for how long who knows?


I wrote a while ago about a rather upsetting visit to the gp’s surgery, which you can read about here. I haven’t updated you all since through my blog, if you follow me on The Myasthenia Kid Facebook page then you will know about this. So I apologise for going over old ground in the next few paragraphs but after that it’s all new, I promise.

So to provide you with some context back in July I saw a trainee gp or as I like to call them a 12 year old with attitude. They were terribly dismissive of my dry eyes, they looked at the Clinical Commissioning Groups dry eye pathway – so what drugs they are “allowed” to prescribe. They tried to palm me off with stuff that came under mild dry eyes and this was after I had the first corneal abrasion. So I had to point out that a corneal abrasion didn’t suggest a mild dry eye problem. So I was given more day time drops but no help at all for the night time ointment that I am allergic to. I got a shoulder shrug and was shoved out the door. Just a quick update though finally after waiting since July I now have an appointment for the Ultrasound that they were supposed to request……for the 10th October! Glad it is nothing serious eh?

So fast forward and blog readers only, this is where you will find out that exactly 4 weeks after the first corneal abrasion, I got another one. So I made a doctors appointment for the 27th August. I attended the appointment filled with hope as this would be with my gp, who had more experience and didn’t feel like they had anything to prove. Unfortunately that was not the case. I explained to the gp that I had suffered 2 corneal abrasions in the last 4 weeks, that I am allergic to three brands of the night time ointment that I had tried . I attempted to show them these photos to show how bad the reaction was but I was told quite firmly “I believe you”

It soon became clear though that they really didn’t believe me. They asked if I was allergic to Lacrilube which I told them I had used it in the past with no issues, however there is a national shortage of it in the UK, I was using the NHS suggested replacement and I was allergic to that. They then decided, despite the computer flashing up that there was a national shortage of this drug when they tried to prescribe it to ring the local pharmacy to see if they had it stock. I could hardly contain myself when I heard the pharmacist tell them loud and clear there is a national shortage of the medication. They then proceeded to tell me that she would prescribe me more of the ointment I was allergic too and if I didn’t want to use that perhaps I could get up 3 to 4 times a night to put my day time drops in.

I will admit to getting rather cross at this point and asked at what point would they consider repeated corneal abrasions serious enough for me to be referred to the Ophthalmologist? I pointed out that I have a connective tissue disorder Ehlers Danlos Syndrome and that eyes are made of collagen. I challenged them to explain why putting my sight at risk was acceptable as due to having EDS I was at risk of scarring. I was really angry, so angry I would have cried if I could produce the tears. My voice was shaking. They then said “you seem angry”. What is this naming feelings shit? It doesn’t make me calmer it makes me more angry, I am not a child who can’t identify what I am feeling. I got crosser and replied “Yes I am angry. I am angry that after two corneal abrasions and two gp appointments I am still being fobbed off.” They interrupted and said “I am not fobbing you off but the Ophthalmology department won’t see you whilst you are taking morphine as that will dry your eyes out.” I pointed out that I was diagnosed with dry eyes at least 5 years before I started taking morphine and I found it highly unlikely that morphine would now suddenly be making my eyes much drier than they had been for the last 14 or so years. 

To cut a long story short I had to demand to be referred to an ophthalmologist as they had tried all the eye medications open to them as a gp and now I needed a specialists in put. To pacify me I am sure she told me she would speak to the ophthalmologists and see if they would accept a referral. The attitude of this doctor to essentially prevent me from seeing a specialist when it was clear that my eyes were severely dry and causing corneal abrasions because my eyelids are sticking to my eyeballs overnight really upset me. Like I said earlier if I could have cried I would have done. I am so sick of everything being a battle and I am seriously worried for patients if they have conditions that need a consultants input that referrals are being barred for no other reason than financial. That is wrong on so many levels and against the hippocratic oath.

Funnily enough less than a week later I got a letter through to book an appointment with the Eye Hospital. Look at that, they did want to see me, even if I was on medication that could make the dry eyes worse. The fact that my letter came through so quickly made me even angrier because it was even clearer that this was about finances not what was best for the patient.

So today ( Tuesday 24th ) I went to the eye hospital. I attended by myself on my mobility scooter as on the letter it stated I could be there up to three hours doing tests before I got to see a consultant / registrar. That was way too long to expect Dembe to work as he is only 10 months and I won’t put him in situations that would be too much for him for fear of putting him off due to bad experiences. So Jay dropped me off and headed back home. 

As usual whomever designs hospital waiting rooms seemed to have failed to grasp that some patients will need mobility aids such as frames, rollators, wheelchairs and scooters. The chairs were crammed together with no space for anyone using a wheelchair or scooter to get themselves into and out of that area safely. This total lack of awareness in a fucking hospital of all places really grinds my gears. This place should be the gold fucking standard of accessibility as surely the disabled are the ones who are going to be using this resource more than the rest of the population. Come on people its 2019 and we are still treating the disabled as an inconvenience or invisible.

I digress. I managed to find a spot for me to occupy that wouldn’t cause an obstruction. I was worried as many people attending the clinic are legally blind, so I checked with the nursing staff that I was ok. I had a quick vision test reading letters off a board  and then I was back in the waiting room. I would be called into consulting room 7, 8 or 9. I was called in reasonably quickly by a young lady doctor. She was exceptionally polite and courteous. I won’t lie I was terrified all of yesterday and this morning that they were going to treat me like a time waster and tell me I would have to come off morphine before they would treat me. After all this is more or less what the gp had suggested. This couldn’t have been any further from the truth.

The doctor was very concerned to learn that I have been suffering from minor corneal abrasions for a year before having the two within 4 weeks. Fingers crossed I have managed to avoid one since 10th August – I know I have probably just jinxed myself. She asked me what ointments I had tried at night to lubricate my eyes and attempt to prevent the abrasions. So I brought out the three tubes. I then said I am allergic to all three, so she asked me to tell her the symptoms. Thankfully in the waiting room I had the presence of mind to screenshot my photos from August so they were the first photos on my phone and I didn’t have to spend an age scrolling – I take a lot of photos. She was quite shocked at the level of swelling. I let her know it isn’t just swelling but the skin burns and itches. She said to me that I shouldn’t use the ointments with that level of reaction to them. Which left me wondering why my gp had issued me with another prescription for one of them? Had they bothered to look at my photos maybe they would have accepted how bad the reaction was. How I have got away with no abrasions since August I have no idea as at best I have probably used the ointments 2 to 3 times a week. As the swelling is crazy after one application and takes a couple of days to go down.

We then went through my day time routine with my eyes and the medications being used, plus my symptoms. I am pretty sure that the gp had stated that I had watery eyes due to dry eyes, which as weird as that sounds is a symptom that some people have with the condition. I never have. I used to have eyes that watered every time I yawned but they don’t even do that anymore. The consultant seemed genuinely surprised when I said no my eyes don’t water and she rechecked the letter she had in front of her. She was very pleased that I had taken matters into my own hands and tried different drops as it moves the situation forward ( I brought all my eye medications I use or have tried with me). She told me if I hadn’t of done this she would now have to try me on various medications to see if they worked. As this had already been done she could go straight to prescribing Ciclosporin eye drops. 

The Ciclosporin eye drops are to used instead of the night time eye ointment. She has warned me they will sting badly when applied and probably make my eyes water. If I can stick with it around 80% of people who are placed on them find they work for them. They will take 3 months to reach full effect. However she wants me back in clinic in 6 weeks as by then I should know if they are helping at all. At that clinic appointment depending on how they are working they may add steroid drops into the mix . She let me know if the Ciclosporin drops don’t work we haven’t reached the end of the of the road and there are still other things to try.

I also had a thorough eye examination. My retinas were checked, the surface of my eye was checked – I had the lovely yellow dye put in them. She flicked my eyelids up on themselves – that made me feel sick and she did it without any warning! She also prodded the bottom lid with a cotton wool bud ( Q tip ) looking at the tear production glands. She told me I have two issues. Firstly I have very dry eyes probably caused by a combination of factors my hormones – the delight of the menopause can make dry eyes worse, my medications – I dispute this as these medications I have been on for years and the dry eyes only took a turn for the worse 12 months ago. However I can’t be bothered to argue as they are treating me seriously and not fobbing me off. Thirdly your autonomic nervous system also controls your mucous membranes so it would make sense with mine being so naughty that it has a hand in this. I made it clear that I wasn’t concerned with what was causing the dryness more the fact I wanted the corneal abrasions limited if not stopped.

After the appointment I was absolutely fucked. I hadn’t realised how very stressed I was due to the gp making out that I was wasting everyone’s time. I was worried about the information the referral letter would contain . The doctor I saw today was really pleasant and thorough. I felt listened to and validated in my demands to be referred to the hospital. Ciclosporin can only be prescribed by a consultant and will mean ( if I can tolerate it) that I will need to attend the eye clinic every 6 months. However after two corneal abrasions it should never have needed me getting so angry to push the gp to do this. Especially when they weren’t offering me any way to limit or prevent the corneal abrasions. I do worry for other patients all over the UK who have real issues that need consultant level intervention who are being denied access to them. I thank god that I stood my ground and got my referral.

Just for a few giggles – I went through the entire hospital and hospital grounds on my mobility scooter completely unaware that my face was stained with the yellow dye they had used on my eyes. No wonder I was getting a few strange looks!

It was worse than this, it was only because I had wiped my eyes I realised!