Ophthalmology

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!

Time for a change

For those of you who have followed my blog for some time you will have noticed this week that on both platforms, Blogger and WordPress that my blog sites have had a makeover. 

The reason behind the change was two-fold, firstly it was just time for a change and secondly it was time to move forward. Both platforms used photo’s of Frankie as part of the blog. My Myasthenia kid page had a photo of Mollie and Frankie from the summer as its banner. Every time I went on the page it was a very real reminder of everything we have lost and the grief I feel. The time both Frankie and Mollie have been gone can still be counted in weeks, I still feel very sad most days. When you are with your dogs like I was 24/7 for the last 11 years they become a massive part of your life. It was like losing two members of my family, the family I have made with Jay. Still having them on the Facebook Myasthenia kid page and as a huge part of both blog platforms felt wrong. Although I will mourn them forever it was time to move forward and the new chapter of our life is now with Dembe our yellow Labrador. Not featuring him when he is a major part of my life felt disloyal to him. So hence the change.

I’ve known since the day we lost them both that the day would come that I felt strong enough to update the look of my blogs and Facebook page. I needed there to have been enough time passed that I wouldn’t feel guilty for changing things. It still took an awful lot to change the banner of my Facebook page associated with this blog. I wondered if people would think it was too soon or that I didn’t care about Mollie and Frankie. No one has said anything and deep down I knew they wouldn’t but you are still very conscious of how things may look to other people. 

The blogs were a spontaneous decision on Saturday night, when Jay was working late. I hadn’t like the look of blogger for ages and I needed to change the banner of the WordPress sites. I had taken a lovely photograph of some tree’s a couple of weeks ago and thought it would make a nice banner / background. I love Woodbury Common it has strong emotional ties for me. Every dog we have ever owned has been walked there, it was where I would go to forget the stress of everyday life before I became too sick to walk the dogs. To have that represented on the blog and it being my photograph gives me a sense of pride.

I also needed to change my Google Avatar. The photo had been a black and white one of me and Frankie. It is one of those things where every time I saw the photo I would hold my breath and wait for the pain in my heart to start. I have now changed it over to a lovely photo of Dembe. I wanted to start to look forward as I have been feeling a lot better of late. More like me and not totally bogged down in my grief. 

It has taken time for me to accept that I am allowed to look to the future and how our life with Dembe will be. Being an only dog he is even more the focus of my attention. He must some days wish that I would shut up as I talk to him constantly. He is the thing ( along with Jay ) that has got me through these last few months, who has forced me to get out of bed, to socialise when all I wanted to do was go to bed and just not have to deal with the world. Although it has been really hard on occasion I have made it through 100% of my worst days and that is an achievement.

The final thing I changed was my profile photo on my social media accounts. For a year possibly more it had been a close up photograph of Frankie’s nose. People always ask me about it as it was a cute photo but when you have just lost a faithful companion it can be really difficult emotionally to talk about it and people assume that he is still with us. I then have to say that he isn’t and that compounds the hurt. So I have changed this over to a photo of Dembe because when I speak about him I don’t feel sad. 

It took longer than I thought it would to change all the stuff. Whilst updating all my social media accounts I realised some of them were out of date and they still talked about Mollie and Frankie. So it was sad updating them but I do need to do this. I will never forget them they were a massive part of my life. They the three of them saved me when I was grieving for Travis our first Weimaraner and then when I became sick. I don’t know if I would still be here without their love and affection. Dembe has done the same shown me that there is light at the end of the tunnel and that it is ok to be sad as long as it doesn’t dominate every waking hour. 

So I hope you like what I have done to the blogs etc I think you will agree it was time for a change.

Dembe aged 24 weeks

Side Effects

Some weeks I really struggle to come up with a topic on which to blog about. This is one of those weeks. In fact it was quite by accident that I remembered this morning that I hadn’t written this week’s blog post which is due tomorrow. Nothing like an unwritten blog post for you to find numerous jobs to do instead of writing! I have practically had to chain myself to the Chromebook so that something, anything gets written. Unfortunately this weeks struggle is due to my medication being altered.

The new dose of antidepressants has knocked me for 6, yes my mood has improved greatly but I am just exhausted 100% of the time. When I am up during the day I feel like I am working through a haze best described like you had a couple of glasses of wine with lunch except its 8am and you haven’t been drinking. I may get a couple of hours in the middle of the day where I don’t feel so out of it but then it quickly returns. That isn’t the only side effect I am having.

Mirtazapine is known that it can play havoc with a person’s appetite. On 30mg a night Mirtazapine did nothing to my appetite it neither increased it or decreased it. Now I am on 45mg a night and I am hungry all day every day. Its like being on steroids all over again. Despite being on my restricted calorie diet and the fact that I shouldn’t be feeling hungry at all, I am battling daily to stick with it. The hunger hasn’t subsided at all and thankfully although I haven’t put on any weight, it isn’t nice feeling hungry all the time and knowing that you can’t eat because if you do, you’ll be the size of a whale very quickly.

It’s also making my dry mouth worse. I already drink an excessive amount day and night due to a faulty hypothalamus. Something I was born with, but it is getting ridiculous as the amount I am drinking through the night means hourly to half hourly I am getting up to have a wee. Lack of sleep or broken sleep is not helping the feeling of having to push myself through a fog to function. In fact as I am writing this I am realising that although my mood has improved it is coming at too higher price. I haven’t even told you about the worst symptom that the increase of medication has caused and that is constipation – there I said it, I’m full of shite!!

My bowels have always been healthy and regular. The only times I have ever had problems going to the toilet have been due to codeine, one dose of that and I am horrendously constipated or when my bladder and bowel decide to shut down for 24 hours. So I was shocked to discover that a well-known side effect of Mirtazapine is constipation. I have had enough to be honest. After two days of struggling to go and feeling like the process was more akin to giving birth than having a dump I decided I better take some laxatives. Again something I have rarely taken in my life. Morphine has no impact on my bowels – which causes all my doctors much consternation because apparently that’s just not normal. But it’s true I have no problems going at all. But I am in agony due to the constipation the increased dose of Mirtazapine has caused. 

Of course I could have just eaten an excessive amount of Sula drops – the constipation would have been over much more quickly. Instead last night I took a mega dose of Senna. Now I have been 3 times but I am still in pain. I managed to go without any problems but I just feel like I am still full of shite and it is making me feel well crappy to be honest. 

Due to having a history of bowel adhesion’s and having to have them operated on I don’t tolerate stomach pain very well. It is a pain that really gets to me quite quickly. Maybe I am over sensitive to it but it is not something I am prepared to put up with. Taking senna every night is not an option as all it does is cause my bowel to be overactive for the next 24 hours and causes me adhesion pain. So the only solution to the issue is to stop taking the 45mg dose and drop back to the 30mg one.  I will obviously monitor how my mood is doing and see the doctor again if I need to but feeling better mentally is coming at too higher price and too much pain. I have been on the increased dose for over two weeks and if anything the side effects are getting worse and not settling. 

Another thing I have noticed is that it has taken away my drive to sew or embroider. I haven’t really wanted to do anything and I am having to force myself to do anything at all creative or to do something other than just sit in front of the TV for hours at a time. Most of the time I can’t even remember what I have been doing. It is a crazy situation to be in.

With all medications you have to weigh up the benefits and risks. The risks to me is that I am just not feeling like me on the increased dose. I don’t like feeling like this. Maybe what I have taken has been enough to get me over this sticky patch. I will soon find out but I know I am not willing to persevere with side effects that are this bad on so many levels.

Solace in creativity

Last week I wrote of my guilt at being happy, although I received lots of supportive comments, my emotions are still all over the place. The last week or so I have cried everyday over Mollie, Frankie and Willow. I think that is why I have been trying to occupy every minute of every day lately through some sort of creative endeavour or to get out of the house, so I can’t sit and brood.

I am beyond exhausted, last week Jay was on holiday and we spent the week catching up on jobs that have probably been outstanding for 12-24 months. Obviously I am very limited in what I can do and with Dembe ( our nearly 16 week old yellow Labrador pup) it is very difficult to do things together. We made a massive dent on the list of jobs that need done but as anyone who owns a house will tell you, one job soon multiplies and becomes another 4.

We have sorted out our bathroom, its been in a state of almost done for around 10 years I kid you not. Little jobs needing done but neither of us having the energy or inclination to get it completed. I finally cracked and decided a week before Jays holiday enough was enough and it would get completed. Initially it was just that the grout and silicone sealant would be redone. That however has evolved into the bathroom being redecorated – overdue as I believe it was last done possibly 5 years or more ago. Which then means that before the walls are painted the woodwork gets repainted. So the thing spirals. All because I can’t spend any free time doing nothing because the minute I do the sadness overwhelms me.

I have been working hard on the creative side of things as well. For a while I didn’t want to do anything, I didn’t know if I would ever be able to do anything again. Both days that the dogs health suddenly declined I was sat at my embroidery machine. I blamed myself for not paying them enough attention. To not sew or give myself a  creative outlet was a way of punishing myself. Because as I stated in last week’s post I love to make myself feel guilty.

So I thought I would share my makes with you. I am limited with how much I can type this week as my shoulder (right) is grinding away and popping out, my wrists and fingers are also playing me up. So typing is uncomfortable.

I have been making this one for a friends granddaughter. This will get turned into a cushion at some point over the next few days, depending on when my shoulders and wrists / fingers decide to cooperate.

I’m not happy with either the hedgehog or the sheep as I rushed the hooping and as a result they have puckered. However these two will be turned into cushions for our home and I was desperate to see how this design stitched out.

I love the highland Cows design, this was from the same Etsy seller who designed the sheep and the hedgehog. This one will be a cushion for us. I am toying with putting this design on one of my blank sweatshirts.

 

 

The Charlotte cushion is a Christmas present for my niece – you probably think I am bonkers but I like to work well in advance in case my health suddenly declines. That way I don’t feel stressed out in December trying to make lots of gifts to a deadline of when Jay will drop them down to our relatives.

The owl Cushion – I bought this design around Christmas time. Due to the dogs passing I never got the opportunity to stitch it out. So I had a go a few weeks ago. I am really pleased with how it turned out. 

The Evie cushion was for a friends Granddaughter. This will be the last one I stitch out of this design as it has been poorly digitised. Every time I stitch it out I have problems in the same place. I have invested in a new unicorn design now!

 

 

 

 

 

 

 

 

I made a job lot of doorstops, many of these will be gifted during the year or at Christmas. These doorstops have washable covers as the bottom has an opening that has velcro to fasten it. Inside I have used cat litter ( clean obviously) to weigh it down. I place the cat litter inside a ziplock bag and also use an elastic band so it has two forms of closures to stop any leakage! I enjoyed making these door stops, it made a nice change and was a challenge for me after making so many items the same on the run up to Christmas and with making cushions.

As I haven’t posted a photo of Dembe on here for a few weeks, I thought I would share this with you. 

This is me and the little man. He sleeps every night with his head on my pillow. Most nights his nose is touching my head or face. I love feeling his breath against me. He is such a loving little chap. Without him I’d have never made it through the last 10 weeks.

First Physio

Today, Tuesday 11th December was my first physio session, in 4 years. I had no idea so much time had passed since I had been to physio. I really wish that I had kept up with it, even if I just went twice a year as perhaps I wouldn’t be in the mess I am now but life just gets in the way sometimes. Things take priority and then your routine falls by the wayside. Looking at it now I realised that I kept those exercises up for two years until I suffered my spontaneous CSF leak and then it was just too painful to do them.

I back to square minus 100, not one. I have zero core muscle strength. My shoulders are rolling forward and are permanently hunched. I am in pain from the base of my skull to my coccyx. When the doctor suggested physio I knew there was only one I was prepared to see and I was so lucky she was still working there. I use a private physio as she is prepared to listen to me and work with me. Don’t get me wrong I love the NHS, I owe my life to the NHS as without their intervention as a child I would have died from an intussusception. However the NHS isn’t great at treating the growing number of people with chronic illnesses, they want to fix you and then move onto the next patient. With chronic conditions like EDS, PoTs etc there is no fixing, so allotting us a certain amount of physio sessions at 15 minutes a go doesn’t really provide us with much help. Especially if you are working with medical professionals that do not understand your medical condition.

The physio I worked with went away and learnt as much as she could about EDS, then we worked on a plan together. It soon became clear that I wouldn’t be able to do the exercises 4 times a day, I would only be able to do them once a day and that was fine with her, Where as if I had tried to have that conversation with an NHS physio ( and believe me I have) you get made to feel lazy or guilt tripped that you are wasting their time. Seeing her again today, she had already pulled my notes and immediately recognised me in the waiting room. She greeted me like an old friend.

My back is in a mess, I know that and she knows that. We both believe that I suffered a whiplash injury when I fell on the snow and ice back in March and that has probably caused the majority of the problems I have now. Basically my muscles are very tight and tense both sides of my spine with the right side being the worst. My muscles are now guarding me against further injury by being tense and barely allowing me to move. She described it as walking around with a clenched fist permanently. After 30 minutes your hand is going to start aching after a few hours it’s going to be very uncomfortable. After months…well you get to the state I am in where everything hurts constantly.

Today’s session was very gentle before we can even start physiotherapy properly we have to get my inflammation levels down and the muscles to relax a little.I had to lie face down on a couch. My face had to go through this little hole so I could only see the floor although I think I kept my eyes closed for most of it. Now I said the session was gentle but in no way was it pain-free. My nerves are misfiring and have become so sensitized that even the lightest touch is causing me pain. So imagine having someone examining every joint in your back. Some joints were ok, they were sore but it was bearable, others had me levitating off the bed as I yelped and tried to squirm away from the light pressure being applied. 

My physio tried to massage some of the muscle knots out but it was so painful she decided to use the ultrasound machine first. It’s so weird you just feel this probe going over your neck, sides and back of your neck and then when she massages them the muscles are much looser and nowhere near as painful. I know that the muscle knots need to be removed but it is a painful process, the feeling after they have gone is sublime as you feel freer and can move more easily. 

By the end of the session I could feel the muscles were a lot looser and more relaxed than when I had started the session. However in the hours since the pain has started. It’s not horrific but I do feel battered and bruised. The weirdest thing is I have a lot of rib pain this evening. I am not sure if that’s because I spent a lot of the session lying on my front or if my back muscles are going spasm ( but a much milder version than normal).

I turned up to today’s appointment with my left arm burning with pins and needles in my hands. I left the session with both of those gone and they haven’t returned in the 4 hours since I have been home. To me that is a massive improvement as since July I haven’t had a day without constant pins and needles. 

My physio says it’s going to be a few sessions of ultrasound and massage before I can start having more traditional physio. My next session is the 19th December. 

I am absolutely shattered after today’s session, I had a busy day yesterday with getting my hair done and seeing a friend. If I could I would have stayed in bed all day. I am just hoping I can sleep tonight rather than what usually happens where the adrenaline starts to flow and I am tired but wired all night!

Its that time of year again!

Well what a week, I have been super busy making gifts for family and friends for Christmas, whilst battling the crippling neck pain and yesterday having a stomach upset meaning I was racing faster to the bathroom than Usain Bolt. It wasn’t pretty and it wasn’t fun. It took a good 12 hours for my tum to stop cramping. Anyway that is enough bathroom talk for the opening paragraph of my blog post.

On top of all of that I have woken up with a very sore finger on my right hand. Its one of my typing finger’s so this week is going to be a photo blog , the joint has swollen, I’m pretty sure its my arthritis playing up just for a bit of variety. I haven’t shown you any photos for what seems like forever. So here they are.

Last weekend we decided that we would get the Christmas decorations out. It is a little early for us but hubby is out with work this weekend and would have been too delicate to climb the ladder into the loft on Sunday safely. All in all it took 90 minutes which is pretty good going when you think the dresser had to be stripped and cleaned, all the pottery that was coming off wrapped and packed and all the gorgeous Christmas stuff put out.

I’ve been beavering away making lots of gifts and then I decided why not add to my work load and instead of buying gift bags buy a job lot of plain cotton bags (blanks as they are known by embroidery people! I found that out this week) and thought I would embroider them. That way they wouldn’t get thrown away and could used for years rather than one Christmas ( I always try to save gift bags but many of them don’t make it through until Christmas having been bashed about whilst being moved trying to find other things.) I bought myself some variegated thread as well, so did quite a few using that.

Sorry the pictures aren’t brilliant, these were taken immediately after they were done and needed an iron really. Now they are stuffed with presents. Here are some that I did using “normal” thread and much better photographs

I finally managed to complete Mr Myasthenia Kids advent calendar that I bought in August but had been putting off for months as it had box pleats something I have never done before. To be fair it wasn’t too bad. We are still waiting for a dowel to hang it from the lounge door so it’s in its temporary location here.

I fell in love with this fabric range from Makower , I have a table runner using this design. On Black Friday I managed to pick up some more fabric in this Christmas range with plans to make some cushion covers. At the time I  thought I may get this done before Christmas then as days passed I did start to wonder if I meant next Christmas as there seemed so much to do ( and I kept adding to it). I managed to knock them up today, which I am chuffed about as I had to use my overlocker to finish the seams to stop them fraying so that they will last and last. I made 4, two of each fabric design

I have two Christmas lap quilts that need bound so that they can replace the current quilts on the sofa. I am hoping I will get these done in the next few days. I will be making a scrappy binding using the off cuts from the cushions and table runner and any other Christmas scraps I can get my hands on. I will get these finished before Christmas, even if it kills me! Which I might do.

Tonight I am shattered, I hope that I manage to get some sleep tonight and stop waking up in a blind panic with all the things I need to do – even though I don’t work I find this time of year very stressful. There is so much pressure for things to be perfect even though in reality nothing is. I do have a few things I need to make for other people and I can’t let them down as it will mess them up for Christmas. I am feeling the pressure.

Next week I start physio, I am really hoping that we can make some difference to my neck issue.

What are your aims with this appointment?

For a while now I have been moaning that my neck is sore / hurts / agony, take your pick. Last week I had blood tests to see if I was suffering from nutritional deficiencies and that is what was causing the numbness / pins and needles in my arms and face. Today I finally got to see a doctor. It was a long wait as with hubby’s hours it is easier if I can book an appointment on his day off, rather than have him come out of work and take me. It was actually getting the appointment to have my bloods taken that took the time to organise. It would appear Tuesday is a popular day. I then had to have the doctor’s appointment a week later. As luck would have it my neck actually wasn’t too sore today, the day I would finally see the doctor.


As this appointment was needed quickly ( although three weeks was three weeks too long really) I decided to take pot luck. I usually try to see the same doctor so there is some continuity of care and they have a basic idea of what is going on. However I was feeling very let down after my appointment in July where my neck pain was put down to stress. Now I was under a great deal of stress at the time mum had been diagnosed with cancer and there were other things going on in the background. So it would be an easy diagnosis to come to but even then I did come away from the appointment thinking I really should have been examined before this was written off as stress. It makes me worry that if I saw that doctor with chest pain that again it would be written off as stress when I could be having a heart attack. It’s not a nice situation to be in when you doubt your doctors clinical judgement. They are supposed to be the experts and be on your side, yet when you get written off as a basket case due to stress, it makes you not want to fight. Which is what I should have done because maybe I wouldn’t be in as much pain as I am now.


I will be the first to admit that yes I have been having some mental health struggles this year due to losing Willow and so many close friends and family in such a short space of time. I also went through a great deal of stress in the summer. I understand completely that mental health issues can manifest as physical issues. Yet the diagnosis of stress or anxiety or depression should only be given after an examination to check that there is nothing mechanically wrong. That didn’t happen during my appointment in July and I am angry about it. I am angry at myself for not asking the doctor why he or she felt that my symptoms of numb hands and neck pain didn’t warrant an examination. I understand that doctors especially gp’s are under enormous pressure, especially with health budgets being slashed, Don’t believe what the government tells you when it says its spending more in real terms its less money and our health service is drowning because of it. Just to make sure if this government stays in power when it suggests privatisation people will believe its the only thing to save our NHS and people like me will have no access to healthcare as we won’t be able to afford the insurance premiums. That’s my political rant over, I don’t do politics very often here but it needs said.


Anyway as usual I went off on a tangent, it makes me really angry when doctors are lazy and use a mental health diagnosis against a patient, which I feel is what happened to me in July. My notes say I am being treated for anxiety and depression, my mother has just been diagnosed with cancer so of course my physical symptoms are a manifestation of that. See how easy it is for a doctor to disregard real symptoms? The sad thing is people with anxiety and depression don’t have the energy to fight that kind of lazy doctoring. That was the position I was in then. I was happy to go along with what the doctor said because I trusted them. I am angry because they disregarded the Hippocratic oath of first do no harm. By brushing off my symptoms of stress they left me open to harm. I could have been suffering from a nutritional deficiency like B12 deficiency, a blood clot, vasculitis   a pinched nerve. However that doctor would never know as they were convinced it was stress and an increased dose of amiltriptyline would do the trick.


Today I was dreading my appointment, my mind was racing, was I going to be dismissed again as being stressed? Or would this doctor take the time to examine me?  I know doctors make mistakes and they are only human but a friend of mine almost died from meningitis after a doctor didn’t examine him. His wife found him unconscious in their home. If she hadn’t come home early from work he would have been dead. I had worked out through google and the fact that I have an ounce of common sense that the numb / pins and needles in my arms and face were being caused by a pinched nerve. Stress does not disappear when you put on a soft neck collar. Armed with this information plus the discharge notes from 2016 that contain the radiographers report from my MRI which says I have reversed cervical lordosis. I was ready to do battle and push for a diagnosis.


Why is it when you are prepared for a fight you never get one? Is it because you are giving off the don’t fuck with me vibes? I don’t know. This doctor examined me, so thoroughly that I have been in an awful lot of pain for the remainder of the day. I can’t complain about that at least this time I was taken seriously. However something they said really threw me, after they examined me they asked ” and what are your aims for this appointment?”. I have to say this really threw me, looking back now I wish I’d said ” well my aim is that I get a fucking diagnosis, after all you’re the doctor”. But I imagine that wouldn’t have gone down well and I may be looking for another healthcare provider if I had. But seriously what kind of question is that? That’s business speak and that has no place in an NHS doctors appointment. Why ask that question? Had I not had years of experience as a manager I may have found myself at a loss for words. Why do most people go to the doctors? To get help? Support? Advice? A diagnosis perhaps? Did they think I was going to say ” I want you to wave a magic wand and make my pain go away?” Did they think after years of dealing with doctors that I would have unrealistic expectations? I have Ehlers Danlos Syndrome I have learnt to expect nothing from a doctor other than a shoulder shrug at best. As you may be able to tell this question ” and what are your aims for this appointment” has really bloody annoyed me.


I was expecting at some point they were going to ask me to complete a PDP ( personal development plan) with SMART objectives Specific, Measurable, Achievable, Realistic, Targets. Or maybe they would have me complete a Root Cause Analysis so we could get to the bottom of what was triggering my neck pain. You see I did 18 years of bullshit management speak. To my shame I taught this shit to up and coming managers in a previous life. It has no place in the NHS as I am a patient not a customer, it has no place in an appointment because all I expect in an appointment is for the doctor to do their job. I have no idea what you will suggest because I am not a mind reader, I thought perhaps you might say I need an X-ray or an MRI or maybe even physio but all I wanted from you was a plan. I don’t know what your other patients want from you but from this patient to you please stop asking that question or think of something else to say. I get that some patients may come in expecting top-notch state of the art care like they see on Holby City  / Greys Anatomy/ any other popular hospital drama and your job is to manage unrealistic expectations. I don’t and that question has really annoyed me ( no shit Rach, I can hear you all saying!).


Now some of you may think that I am over reacting to this innocent question but to me it was a loaded question. I don’t doubt that this doctor had my best interests at heart, they after all discovered that I have altered sensation in my left arm and areas of complete numbness, they also have given the diagnosis of a pinched nerve in my neck. Which was the same conclusion I had come to. To me the question could be one asked by someone trying to figure out what the bare minimum is that they will get away with providing . Call me cynical but after having to do battle with numerous doctors over the years I know that cost is coming into clinical decisions more and more. It can’t be helped when the purse strings have been tightened so much that even targets for patients with cancer are being missed by the majority of NHS hospitals. If  my aim was to have my pain reduced that’s a quick win as they could give me a prescription for pain meds, if I wanted a referral to a spinal surgeon then my expectations would have to be managed and ( as I know) physio would have to be tried first. As it is I want to avoid surgery on my neck at all costs. To me the risk are just too high, that unless I am completely incapacitated by pain,  it’s not an option I want to go for. 

Having seen a spinal surgeon before I know they like you to try all options before you go for surgery and I am happy with that. Physio treatment in 2014 or 2015 meant I avoided a spinal fusion. I know that without having jumped through that hoop any referral to see a surgeon would be rejected by the hospital because all non surgical routes had not been explored. 

I have declined using the NHS physio team as unfortunately they are utterly useless when it comes to dealing with people with EDS. The last NHS physio I saw was supposed to be an expert on the condition and I could have written what she knew about EDS could have been written on the back of a postage stamp. She became totally fixated on my wheelchair, so none of the exercises were there to help the problem I was seeing her for but more to get me walking rather than using a wheelchair. I use a wheelchair due to the fact I faint without warning which leave me at a serious risk for a head injury, I also dislocate my knees, hips, ankles and spine when I walk more than a few metres. I also develop bursitis in my hips if I walk too much ( too much being more than a few metres). I had to give up walking my dogs in 2008 as I kept waking up on Woodbury common bleeding not knowing what had happened to me and the dogs wandering down the path in front of me. Thankfully the doctor I saw today was horrified at this physios dangerous fixation and agreed with me that preventing head injury and pain was imperative. Someone who was supposed to be an expert in EDS and PoTs should have known that. Hence why I am incredibly sceptical as to who gave this physio the title of an EDS expert because I have more knowledge than they do.

So I am going back to the private physio I saw in 2014 and had fantastic results with. It is incredibly expensive but I am hopeful if anyone can help me avoid spinal surgery Jane will. I hate using private instead of the NHS but I am afraid NHS appointments are too rushed. I need longer than 15 minutes, I need someone who will work with me and will admit that they know nothing about the condition rather than pretend they are an expert. It also means I wont have to travel 30 minutes to an appointment which will exhaust me before I even get there. Or the unrealistic expectation that I can go three times a week, when I don’t have a driving licence and can’t manage public transport alone as my wheelchair is attendant pushed how am I supposed to get there? Because I am a paying customer there I am  treated in a much better way and they understand that there us a life outside of the health service something which some NHS staff struggle to understand. I am incredibly lucky that I am in the position where currently I can afford to pay for private treatment but it will still put a strain on my finances.

So I wonder what will be the next go to question at any future gp’s appointment? As long as it isn’t “and what do you want me to do about it?” I think I’ll cope!