Medical arse covering

I know that this blog is called the Myasthenia Kid and yet of late I barely mention any Myasthenia like symptoms. Let me assure you I suffer almost every day with MG like symptoms. I think after my treatment at the hands of Doctors in 2009 and 2010, I just shut down. Those doctors who were the supposed experts did such psychological damage to me that I struggle even now ten years later to vocalise when the MG symptoms strike.

Currently the ptosis I suffer with ( daily to varying degrees) has been diagnosed as idiopathic hemifacial spasms ( and they ignore the fact that mestinon cures these “spasms” in around 20-30 minutes). The treatment suggested back in 2017 was Botox injections, funnily enough though no one has stepped up to do these injections, could that be because 1. I don’t have spasms my face is paralysed and 2. Botox and MG are contraindicated?

Its like the home oxygen supply I have,  apparently I don’t have any issues with my breathing well other than the suggested breath holding by the twat of a pulmanologist I saw ten years ago….. yet I have an oxygen cylinder and an oxygen concentrator. Do you see the running thread here at all? One might suggest there was a hell of a lot of ass covering going on here.

I have breathing problems on quite a regular basis. A lot of the time the shortness of breath can be alleviated with a booster dose of mestinon… you know the tablet that doesn’t work. On my very bad days I will use my oxygen concentrator. Tonight maybe one of those nights. I know why this is happening it is because I have been pushing myself so hard physically the last few days trying to get jobs completed. It’s the first time in around a year that I have done this much and as usual I have totally ignored the fact it will knock me on my ass.

Due to me having PoTs I take mestinon (also known as pyridostigmine bromide). It raises standing blood pressure, I can’t say that I have noticed any effect on my blood pressure but it really helps with the Ptosis and muscle strength which I lose as the day goes on. But obviously the muscle strength thing is all in my head and the ptosis resolving is the placebo effect. I just think it is another case of arse covering.

Some days when things are really bad the mestinon does nothing. It doesn’t help the breathing or the ptosis. Those days I stay in bed and pray that I don’t need the hospital. Years ago I told Jay no more trips to hospital unless I was unconscious or I asked specifically asked. I don’t do hospitals anymore because I always get treated like I am a time waster who “thinks” I have Myasthenia Gravis. 

Even though I have multiple conditions now diagnosed, some doctors still ignore all that – even with the positive test results and jump straight onto the fact that I was diagnosed by a neurologist with somatiform disorder – notice I say a neurologist. Which is a bit like asking a cardiologist to do spinal surgery.  They also like to bring up my mini breakdown in 1999 – yes 20 years ago and use that as a reason why I am unwell. Despite the fact I went many years without any depression due to the hard work I put in through two years of counselling and CBT.

Yes at the moment I am suffering with depression and anxiety which I would consider perfectly normal considering the losses I have dealt with in the last two years. I have lost 4 friends, my grandmother and my three dogs. Obviously Frankie and Mollie passing within 7 days of each other really knocked me back. I ended up speaking to a doctor last week – more on that in a second, and had my antidepressant dose raised and was given some diazepam for when I can’t get out of the panic cycle. Thankfully since the antidepressants have been increased and I have the diazepam I have been feeling quite a bit better. It’s just as well as I have to be honest I really wasn’t coping, I was doing a great job of masking it and some people can’t get their heads around high functioning depression. Believe me I can keep going even when I feel dead inside. It takes a lot for me to finally crumble. And last week it finally happened.

Anyway a slight diversion just for a laugh, I am on the phone breaking my heart to this doctor, saying about the panic attacks, the anxiety, the grief and the depression. I kid you not I was asked if I had considered taking Kalms (  see what they are here ) and then the piece de resistance had I tried rescue remedy (here ) if I hadn’t been breaking my heart I would have launched at her. What the hell was she doing ??? look at the medications I am on does she not think that I am way past some fucking Kalms and 3 drops of rescue remedy? I couldn’t get off the phone quick enough, despite that she still managed to bang on about using meditation. I pointed out it doesn’t work for me and leaves me feeling worse.

I do a guided meditation when I can’t sleep and my mind goes nuts with useless information flying through it. It makes me seriously worry that if someone was suicidal this berk would have offered them St Johns Wort and wondered why they hung themselves. Obviously the last sentence isn’t funny its a genuine concern, when depression isn’t taken seriously and the problem here was a locum gp who wasn’t aware of my magnificent mental health history, they may try to fob someone off with mindfulness. Mindfulness is fine when people feel a bit down or stressed but it won’t treat someone who is very / severely depressed. Same as rescue remedy will not treat Generalised anxiety disorder or OCD. It is only because I can and do speak up for myself that I got what I needed, increased meds and some extra meds. I knew I just needed a bit of breathing space to put myself back together. Had I not forced the issue, well I don’t want to think about it really because I was teetering on the edge of becoming seriously unwell.

Anyway I digress, don’t I always. The way I have been treated by the medical profession especially any time that Myasthenia Gravis is raised has left me with a fear of doctors and a phobia of hospitals. I have spoken to so many other people with chronic illnesses who say the same. We stop going to the doctor because we know we will be fobbed off.

Take the doctor in July who told me the pain in my neck and the numbness in my arm was stress. In December I went back, because I was now losing my grip and the numbness was worse and I am told I have an impinged nerve, I need physio but the doctor believes I will probably need surgery to decompress the nerve. Thankfully I have avoided that by paying to see my private Physio. Someone who works with me and lets me know that she understands I know my limitations and she can’t push me.

So no the MG symptoms haven’t disappeared I doubt they ever will. They will just be a host of additional symptoms that no one is prepared to say without a positive SFEMG or blood test what it is and lots of medical arse covering will take place.

Me on Monday afternoon. Does this look like a spasm to you or paralysis? As you can see both eyes are trying to close. My right pupil has drifted to the side of my eye socket. The left eye is desperately trying to stay open by pulling the eyebrow up but as you can see the eyelid is trying to close. The fuckwittery I have to deal with is outstanding!

Advertisements

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.

Getting back to normal, if there is such a thing.

Around two days after I wrote my last post “Washout” I ended up contacting my doctor and was prescribed antibiotics. I had been running a temperature for around a week and I just wasn’t feeling any better. 

 
Wednesday morning (30th January) I woke up in the middle of the night feeling like someone had smacked me in the face with a shovel. My sinuses hurt, my teeth hurt and I felt violently sick. As I quite often get migraines like this I decided to try to get back to sleep, it didn’t work. As the morning wore on the pain was increasing where as my migraine attacks last 12 hours at the same intensity I had to concede that this wasn’t a migraine, I had sinusitis and probably a chest infection. When I described my symptoms to the gp she agreed and I was given a 7 day course for amoxicillan. No wonder I had been feeling so awful.
 
After 3 days on the antibiotics I was feeling almost human again. However as usual the antibiotics did a number on my innards which required me to take at least 6 imodium a day. The diarrhoea was so bad it left me feeling drained and triggered off very painful spasms causing me then to have bowel adhesion pain. I stuck with them until the end of day 5, after that I just couldn’t do it anymore. 
 
I could cope with the exhaustion levels if my pain levels hadn’t suddenly just ramped up. Out of nowhere I am back to having extremely cold legs which have to be warmed up by a hot water bottle or by sitting on my electric throw. When going out in the cold and believe me it’s not that cold for this time of year, yesterday it was between 6 and 7 degrees Centigrade, I was in agony with my hands despite having my arthritis gloves on and my legs were aching despite having leggings on under my jeans. I had just gone through a really good period, pain wise and had barely been touching my oramorph which I use for breakthrough pain but as of two days ago, I am taking it every 4 hours when awake to try to knock down the pain levels I am currently experiencing.
 
At the moment there seems to be no happy medium temperature wise. I am either hurting due to the cold or stripping off my layers because I am suddenly boiling hot. So hot that I am sweating. An hour later I am back to freezing again and this cycle repeats itself throughout the day. I wish I knew what I could do to combat it. It’s not like the flushes I was getting before taking the red clover, black cohosh and the sage leaf supplements which have done wonders for my hot flushes. This is a temperature regulation issue. And temperature control is part of the autonomic nervous system. I guess it’s just adding in another element of fun.
 
On a happier note Dembe is settling in very well, you can read about his adventures at www.thedembediaries.com I publish every Monday letting everyone know what he has been up to over the previous week. I don’t know where I would be without him if I am honest. It is exhausting though looking after a puppy when you compare looking after adult dogs who are independent and happy to be left sleeping for most of the day.
 
Dembe is very close to me but I wouldn’t expect any different, he and I are alone together all day ( around 11 hours) bar Jay coming home for 30-40 minutes at lunch time. Dembe loves Jay too, you only have to witness the furious tail wagging when Jay comes through the door to know that. But he is a mummy’s boy at heart. He loves nothing better than curling up at the end of the sofa and sleeping, as long as I am at the other end. 

 
 
 
When I get onto my sewing machine or embroidery machine, he sleeps on the bed I made him in the kitchen. Due to feeling so rotten, not a lot of sewing has gone on. However I did manage to finish this birth announcement cushion, which is a gift for a friend to celebrate the arrival of his daughter. By the time this blog post is published the gifts recipient should have it.
 

 
I am really pleased with the cushion as the feet are from one design and the text is from an inbuilt text on my embroidery machine however I had to get the placement and size of the text right so that the cushion looked balanced. 
 
I used a product called Sarille, which is a type of interlining mainly used on curtains. I saw in various groups lots of suggestions for using wadding behind embroidery designs that were stitch dense and being sewn onto lightweight fabric. I had loads of the Sarille lying around from when I used to do my subscription box. It has given the cushion a nice bit of body at the front and it has also ensure there is minimal puckering. 
 
It’s the first bit of sewing I haven’t had to force myself to do since Frankie and Mollie passed away. For a while there I didn’t know if my sewjo would ever come back or if Dembe would sleep enough for me to manage to get anything done. Jobs are taking me longer as I now tend to wait for Jay to be home before sewing anything. Embroidery is different as I can get up and move away ( when the machine / thread is behaving), so I can keep an eye on Dembe. He is very used to me doing bits of embroidery, he  will lie on his bed in the kitchen and go to sleep. Puppies do sleep a lot although when they are manically running around, chasing their own tails it can seem like they never sleep!
 
I have also managed to get two other bits of embroidery done today, birthday presents for March. I do like working ahead so that I don’t feel under pressure. Whilst I am in the mood to be creative I tend to go for it. Its only in the last few days that I have felt the creative juices starting to flow again. That has as much to do with getting over the infections as it does with dealing with the grief losing the dogs caused. 
 
Its taken 4 weeks for me to feel anywhere near normal and it is still very raw. I am managing to go days without crying where as in the beginning I was lucky if I could go an hour without breaking down. 
 
I am finding it very difficult at the moment to motivate myself to write this blog, mainly because the dogs, our Weimaraners featured in it from the very beginning. They are what kept me sane and kept me going, when it would have been incredibly easy just to give up and not fight anymore. It is taking some getting used to being without them. It’s a new normal and it’s going to take a while to get used to it.
 
 

Washout

 

Well the last week has been a bit of a washout, on the day my last post was published I started to come down with a nasty virus. My throat felt like I had swallowed a packet of razor blades, I started to ache all over and my temperature started shooting up. Within the space of a few hours I had gone from feeling ok to wanting to crawl into bed and cry.

Thursday was also hard because Frankie and Mollie came home to their resting place. It was a really emotional day. Jay and I wanted them back home with us but it also meant it was final and we would have to accept that they were gone. They have a beautiful spot on our bookcase in their Emma Bridgewater pet bowls with their names on.

I can’t look at the shelf at the moment I find it too upsetting. I miss them both so much but particularly my Frankie. He would have loved Dembe as he was always crazy about puppies. Whenever Jay took him to the vets and there was a puppy there Frankie would cry until he was allowed to go up and see the puppy. 

I remember him when we had the 2nd litter of Weimaraners and he had them hanging off him, all different places and some quite painful and he never batted an eyelid. He was so very gentle when it came to puppies. He didn’t like other fully grown dogs much ( other than Mollie his mum and his sister Willow, who we lost in 2017) but puppies oh how he adored puppies. I know he would have adored Dembe.

Obviously due to the emotional battering we have taken over the last few weeks both our immune systems have been compromised. I rarely pick up any bugs that are going around even if Jay comes down with them 99 times out of 100 I will avoid them. So its unlike me to come down with something first. However over the last few weeks we have been out and about much more than we have been previously. I have mixed with many more people than I normally would. So I have probably been a lot more exposed to other people’s germs than I would have been before. 

I haven’t worn proper clothes since last Thursday I have just had to lounge around in my pj’s because I just don’t have the energy to get dressed. Some of my friends have also come down with this virus and have ended up quite poorly with both chest and sinus infections. Hubby has said they are dropping like flies at work and he is now starting to come down with a cold.

Dembe still brings us much joy and delight. He is such a happy pup, he just wants to please you the whole time. He has mastered sit and paw. We are working on his recall at the moment as he will be able to go out for his first walk on Thursday. Initially whilst we are still working on his recall, Jay will be walking him around the local streets teaching him to walk to heel and to get his bearings. He is desperate to get into the outside world. He loves sitting on the lounge window ledge and looking outside. 

I don’t know what we would have done without Dembe, this Friday we will have had him 3 weeks and he will be 11 weeks old. He has grown loads but is still tiny compared to our other dogs. I don’t even remember our other dogs as puppies. Probably because they grow up so fast. He changes every day and each day just brings us more joy. 

The really weird thing is Dembe on Friday seemed to know that I was feeling really rotten. Whilst I was lying on the sofa he wanted to sleep at the end of the sofa just like Nurse Frankie did whenever I was really poorly. Normally Dembe sleep’s in his bed in the kitchen, so it is quite unusual for him to spend long periods of time on the sofa with me. He was so calm all day Friday, like he knew he had to tone things down as mum wasn’t feeling well.

He also loves empty toilet roll tubes just like his Uncle Frankie did. He has a box full of toys but he goes crazy for an empty toilet roll tube. It is so sweet that he has some of Frankie’s ways about him, he also loves a ball like Mollie did and loves cuddles like Willow. We don’t compare him to our other dogs as that would be like comparing apples and oranges. It is just nice to talk about the others and him in the same sentence.

Well as I have heard from friends all over the country who have succumbed to this virus / flu-like bug I hope you all manage to avoid it. It is really nasty, I spent most of last night coughing as my throat kept drying out. Until next week…

Hoping for a quiet 2019

My last post was published on the 10th of January when I felt like my whole world had caved in. The last few weeks have been very hard, I miss Frankie and Mollie so much that my heart aches. There has not been a day that has gone by where I haven’t wept with the pain of losing them as suddenly as we did. To lose two dogs in 7 days is something I wouldn’t wish on my worst enemy. I wouldn’t have got through it without hubby by my side. In fact I would have probably given up completely had he not been here.

 
Due to the shock, upset, grief hubby has taken some time off work. He already suffers with anxiety and depression and to ensure he didn’t take a nose dive he saw the doctor and got himself signed off. He didn’t want to see anyone or talk to anyone. Losing Mollie hit him very hard as she was his dogs. Plus it was very traumatic for us over 24 hours where it became clear that she had suffered from a stroke and there would be no recovery from this. We nursed her overnight and made sure she wasn’t suffering. Right up until the end she only wanted her dad, whenever she was out of his sight she panicked. Jay stayed with her until the end as I had stayed with Frankie just the week before. To say our hearts were broken would have been an understatement.
 
I took a break from this blog as since the beginning back in 2008 the dogs have featured quite heavily in it. My Gravatar is me with Frankie, Frankie is the banner on WordPress, on Twitter his photo is my profile picture and its the same on Facebook. Although I have managed to change my about me pages on both blog platforms, I can’t remove his photo from any of my social media profile photos.  It feels like a huge chunk of my life has just vanished. Life as I knew it was taken away from me in the space of 7 days. I never knew I could feel so utterly broken by the passing of three dogs in just a little over the year.
 
For a few years Mr Myasthenia Kid and I had talked about what would happen when we no longer had any dogs. Initially we had said we would get a Labrador ( black) then we talked about a Beagle and also a Bracco Italiano. However for the last few months I had said I didn’t know if I wanted another dog, I knew losing our last two Weimaraners would hit me really badly and by getting another dog meant at some point in the future I would have to go through the pain of losing it all over again. Jay was not having any of it, he said that I was already completely socially isolated and without a dog I would have no company at all. He felt it would be very damaging to my mental health. He was right, as 7 days without a dog in the house were the worst thing ever. I missed everything about having a dog, the cuddles, the mess, the unconditional love, someone to have silly conversations with.
 
By the Sunday after Mollie’s passing we decided that we would get another dog and we started looking on-line for Labrador puppies. I had to give myself a crash course on Labrador’s having not ever owned one. I located several breeders who had litters on The Kennel Club Website. Luckily one lady immediately responded to my email and told us she had two male yellow labs for sale. Obviously we had originally said we wanted a black lab but by this point it didn’t matter what colour it was. We needed our house to feel like a home again, we were both distraught and sinking fast. We arranged to travel to see the 2 pups available the following day.
 
The rest is history, we now own a 9 week old Yellow Labrador called Dembe. We chose his name from the TV programme the blacklist, it means peace. Which you will probably agree we need by the bucket full. Dembe came home with us on Friday 11th January. You can read all about him   here as I have started his own blog for him. I will from time to time have photos of him on this blog but it is much easier to have all the news about him on a separate blog. Every Monday I will give a run down of what he has been up to the previous week. 
 
Some of you may be judging us, that we got a new dog too quickly or that we didn’t love our other dogs that much because we replaced them with Dembe. Dembe is not and has never been a replacement. He is an addition to our household. He is very much-loved for the dog he is and will become. Anyone who thinks any less of us for this can just fuck off as far as I am concerned, your opinion is of very little value to me.
 
So whilst I took a break from here, I have been setting up Dembe’s blog. I managed to keep writing which out of all the things I do creatively was the only thing that I could keep going. I hadn’t been able to sew since Mollie passed away. I managed on the 16th January after a break of nearly two weeks to sit and do a small piece of embroidery. Mainly to ensure that Dembe wasn’t scared of the noise the machine made. The only thing that has freaked him out so far has been the ironing board and it does the same to me if I am honest.
 
My health has been hit quite hard by the sudden turn of events. I have suffered vertigo, continuous headaches, back spasms, Eczema, migraines and ptosis. As usual it a few days after the event before I started to go down hill. Thankfully with Jay off work we have been able to manage Dembe’s care and socialisation process. To be honest without him I would have crawled into bed and never come out again. This little chap has saved us both. The lady that we are friendly with at the vets ( who had a soft spot for Frankie) called Dembe our miracle dog. She knew how much our lives focused on our dogs and also knew that without a dog in our life we would fall apart. 
 
So many people have told us that we have done exactly the right thing. It doesn’t mean that we loved our Weimaraners any less, it is because we loved them so much that we had all this love to give to another dog. 
 
Dembe has bonded with us both. He is such a happy, laid back dog. His tail wags continuously. Everyone who meets him falls in love with him. I thought at one point after Mollie had passed away that Jay looked like he was going to drop dead from a broken heart. He was just an ashen colour. I have seen Jay poorly many times but this was the worst I had seen him look for a long time. Since Dembe’s arrival he is looking so much better, we both feel like there is a future in front of us. In the immediate aftermath of losing both dogs it felt like we were staring into the abyss .
 
I am hoping that my health stabilises shortly, it is going to have to as Jay goes back to work from Monday 21st and it will just be me and Dembe. However Jay will be coming home at lunch times to help with feeding and toileting. He still has a few weeks until he will be able to go out for a walk. Whilst Jay is home though I am trying to take it as easy as possible. Jay has been doing everything for me as usual.
 
2018 ended in a way that I didn’t see coming and 2019 started in a way we never envisaged. All I can hope for is a quieter year for the rest of 2019.
 

 
 

 
I will never forget the love that these three beautiful loyal dogs gave me. Run free my darlings, we will miss you everyday for the rest of our lives.

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!

17th October

For the last ten years I have written about how much I hate October and how this month always fills me with sadness. This year is no different. In some ways it is worse.

This morning (17th Oct) I woke up sobbing, as today is the 12th anniversary of our beloved first dog Travis’ passing. He has been dead longer than he was alive, just under three years. The pain today is as raw as it was on the day we said goodbye. Why it is so bad today I don’t know. Perhaps with everything that has gone on in the last 12 months ( losing Willow, Pam, Gran, mum having cancer – now in remission) it’s all the stress just being released. I often wonder how it is possible that I can shed so many tears for a dog that was in our lives so briefly but he wasn’t a dog to us. He was our boy and the pain of saying goodbye is something I will never get over.

Losing Willow on December 15th was hard but she had lived for 11 years. In that time she had been pampered and showered with affection. She had fought many battles herself having cancer, a pyometra both of which could have killed her. I had a sneaking suspicion in the months before her passing that the cancer had returned but it was internal. I know people thought I was crazy when I voiced my concerns, like I was wishing her life away but I know my dogs and I know when things aren’t right. I have cried many tears over Willow but it is a different pain I feel with her passing. I miss her, I remember her fondly. The pain I feel with Travis is like a knife to the heart. The level of pain is not something that has ever gone away. I can talk about Willow without breaking down although some days it makes me feel terribly sad. Talking about Travis about 50% of the time will reduce me to tears no matter how strong I am feeling. It doesn’t mean I loved Willow any less, it just means Travis’ life was cut short and I mourn the time I should have had with him. However had he lived I would never have experienced life with Frankie, his nephew.

Poor Frankie and Mollie ( Trav’s sister) have been desperately trying to lick my face clean of tears all morning. I am trying to pull myself together because I know the sight of me breaking my heart is distressing them. I hate upsetting them. They are my last links to Travis, Mollie is his sister born a year later from the same parents and Frankie, Mollie’s son is his nephew. I never realised how much Frankie looks like Travis until you compare photos side by side. That’s probably why I dote on him so much. After Travis passed away I said I would never have another boy dog in the house and then after Frankie had been with his new owners a week he came back to us as the children were allergic to him. His owners broke their hearts when they returned him. I have never seen a man so broken by a dog ( other than Jay when Trav passed away and my dad when his beloved Esme passed away). I shed a tear with them. At that point I was resolute that Frankie would be sold. Within a few days I knew I could never let him go.

And now Frankie is 12 and not in the best of health, Mollie is 14 and still bouncing around like a puppy but deaf as a post. A few days ago on her walk she was playing with another Weimaraner half her age and giving as good as she gets. Yes I will be devastated when pass away but I know that they lived full lives, surrounded by people who love them. Travis’ life was cut tragically short and I think that’s why I find it so hard to deal with.

I hate October particularly 17th and I probably always will.