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!

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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.

Down the rabbit hole

What I have been holding my breath waiting for since the start of the year and all the bereavements we went through has finally happened. I knew at some point my health would be impacted and over the last 7 days it’s happened.

 

I’ve spent a few days in bed this week, purely because the chest pain on moving and the level of exhaustion was becoming unbearable. I really hate it when my health takes a nosedive as it can be months before I get back to where I was before. The same thing happened last year when we went through two bereavements in the space of 6 months. It took me from the May until the October to get anywhere near where I had been before.

 

I hate the feeling of helplessness and vulnerability this creates within me. I lose all motivation to do anything and just want to hide away from the world in the hope it will leave me alone. But it wont and I have to be a grown up and deal with the things that make me feel uncomfortable.

 

I am fed up with the professionals in my life telling me that my body’s  and minds response to this is normal, personally I’d prefer that they waved a magic wand and made it all go away. However I know it’s not going to happen so I just need to put my big girls pants on and get through this.

 

I am trying desperately hard not to fall down the rabbit hole and get seriously depressed. I won’t lie I am dealing with depression and anxiety at the moment. I have lost my sewjo, I have just been too exhausted and when I have tried to sew I’ve ended up with horrendous double vision. Sewing to me since October has been like breathing so to not be able to currently do it is frustrating. Hopefully it ( my sewjo ) will return soon and I will physically be able to do it.

The Great Pretender

 

Sometimes when you are blogging you can feel like you are living a lie. There is a life  that I share with you through my blog and then there is the private life that I share with my nearest and dearest. Just recently I haven’t been sharing the whole truth with anyone.

 

As my regular readers will know Mr Myasthenia Kid and I have been through some pretty traumatic times of late. We lost one of our beloved dogs just before Christmas, then my Grandmother passed away, then my dear friend Pam passed away and then a school friend passed away. At the time it felt like I was just coming up to the surface to catch my breath and something else happened. There was no time to process anything at all. I knew that it was affecting me as there were days where all I would do was cry but I also knew it was having other effects on my mental health.

 

I have always been a really anxious person, I have spent years  in therapy learning how to do CBT. The problem this time was no matter how rationally and logically I could see what I was getting anxious about was ridiculous, I still ended up diving down the rabbit hole. I was waking from what little broken sleep I was getting in a state of absolute panic – usually clueless as to what had set it off. My anxiety was reaching proportions I had never experienced before. I felt constantly as if I was in flight or flight mode, all the time pretending to everyone around me I was ok. I didn’t see the point of bringing up my anxiety because I knew it was irrational and there was nothing for Mr Myasthenia Kid to fix. I just thought I would try to soldier on. At some point it had to get better right?

 

I tried bringing up my anxiety with my hospital consultant. I explained to him what had been going on and he responded “well it’s early days, give it a few more weeks and see how you feel”. The problem was he didn’t realise that if I am bothering to bring something up in an appointment it has got to the point where I can’t cope with whatever the issue is anymore. I don’t bring up all the different things that are wrong at every appointment, as we’d be there all day. I only bring up the most pertinent issues. If I am bringing up anxiety, it’s a big issue. Especially with my previous issues with mental health which are almost 20 years ago now.

 

Although the hospital consultant never meant for me to take it this way, I am sure, I felt like he told me to pull myself together and stop making a fuss. So I continued to solder on, with the trip to Birmingham only a week away I knew I had to hold it together. My anxiety was going crazy, I was barely sleeping but I just had to keep going because it would settle down, it would get better. The problem was it was just getting worse. I wasn’t sleeping and every waking hour was filled with fear over the slightest thing. I had permanent butterflies and I was close to tears constantly. Anything at all was making me burst into tears, which wasn’t me.

 

Last week it all came to a head. On Monday after my fall I kept bursting into tears. Initially I put it down to banging my head and the stress of the boiler not working. However as the days went on I was still crying at the drop of a hat. I had to face facts that things were not settling down, I was feeling worse than ever. Jay had noticed that I had become incredibly quiet and continually distracted (staring off into space), to the outside world it was still business as usual but even that was becoming hard to do. I am a great pretender but I was even beginning to struggle coping with the outside world. I had started to withdraw from my friends and just hadn’t bothered to message them as I just couldn’t cope with the thought of having to maintain a conversation and pretend that I was ok.

 

I managed to get the Duty Doctor to ring me as all appointments until after Easter had been booked. When the receptionist asked what was wrong and I replied anxiety and depression, she immediately put me on the duty doctors call list. I am eternally grateful that she didn’t think that I could wait for a standard appointment. I wasn’t at risk of doing anything stupid, I wasn’t feeling suicidal, I just felt like I couldn’t cope with everyday life. The doctor rang me back in a few hours and I explained what had been going on. She was so kind and understanding, she didn’t make me feel like I was overreacting and that I should be able to cope. She told me most people struggle with one bereavement to suffer so many in such a short amount of time would knock anyone. I was prescribed diazepam to use on the days when the anxiety was at its worst, when I just couldn’t calm down. To help me sleep she doubled my dose of mirtazapine.

 

I am slowly starting to feel a lot better, I seem to have had a break in the constant feeling of panic that I couldn’t stop before. I am still anxious but its at a more normal level. I am however exhausted constantly, my sleep is still hit and miss. Some nights I am out like a light but others I am still wide awake hours after taking my meds. I am also feeling very groggy the following morning and it’s taking me a bit of time to wake up. All of which I can live with if it continues to improve my level of anxiety as I don’t want to end up with the situation where the anxiety eventually causes me to become depressed.

 

So that you can appreciate how bad things had become I had got to the point where I had become frightened of using my sewing machine. Now anyone who reads this blog or knows me in real life knows that my life revolves around Jay aka Mr Myasthenia Kid, Mollie, Frankie and Sewing. I live to sew, when I am not sewing I am planning my next project. So for me to suddenly become frightened of my machine, was just bizarre. I can’t tell you exactly what it was that was frightening me but I just felt like a complete failure and that nothing I did was good enough…….a great pretender.

 

A few days after I had been on the meds I got my sewjo back. I decided to tackle my subscription box project which I hadn’t even had a proper look at since it had arrived at the start of March. It was really complicated but I just took it very slow and steady. This was the result

 

 

Dresden Plate design cushion cover in the newly launched Liberty Quilting weight range of fabrics.  I was so proud of it I posted it on the Sewing Quarter Fans page on Facebook.

 

Then on Sunday morning this happened

 

My Cushion was mentioned by Jenni Smith who works for Liberty of London on their fabrics. I was so chuffed, it has given me some confidence back again. So much so that I made another Dresden Plate cushion cover design on the Sunday.

 

 

So I am hoping that things just continue to improve now. I still get anxious, I always will but I no longer feel like I have to pretend that everything is ok. I (well we, me and Jay) have suffered a huge loss in a short amount of time and it’s ok not to be ok sometimes. You don’t have to pretend that everything is going well.

Up and Down

This week has been a bit up and down health wise and emotionally. For a few days out of the last week my back has been exceptionally painful, with no position be it standing, sitting or lying providing any comfort. Insomnia was back with avengence resulting in me ordering a new fridge freezer at 5am on Friday morning having been awake since 3am. Saturday I was struggling to breathe a problem I haven’t had properly in years. Eventually after the second dose of mestinon it eased but for a while there I was fully expecting a trip to hospital.

 

I have been waiting for my health to take a nosedive, you can’t be through the sheer amount of losses Jay (Mr Myasthenia Kid) and I have through December and January and walk away unscathed. Jay had to see his consultant dermatologist this week as he suffers with Psoriasis. In his follow up letter it stated  his Psoriasis was flaring up due to “ major life events” it was only then when I saw that it black and white that I even began to acknowledge that what we have just been through isn’t normal and isn’t just one of those things. I excused myself for having a bad day last Thursday and spending most of it in tears. I accidentally called Frankie, Willow. His face lit up like Willow was going to walk through the door at any minute and my heart broke all over again. I hated the fact I had lifted his hopes up, when she will never be coming home.

 

So due to all the emotional fallout of the last week and not being particularly well things have been quite slow on the sewing front. I have had a couple of days where I haven’t sewn at all. I won’t lie I am struggling a bit under the weight of it all. However there are some exciting things happening in the future which I have to keep under wraps at the moment. As soon as I can share I will.

 

Makes this last week:

Phone stand and Glasses case.

 

Thread catcher

 

Thread catchers and fabric storage canisters.

This was my first attempt at using my creative grids pineapple trim tool. For those of you who don’t know about quilting each style of quilt has a different name. This is a pineapple block, it needs a lot of work!

Pam

Just when you begin to think that life couldn’t get any tougher and you finally feel like you can take a breath again, the universe laughs and tosses you another curve ball. I wrote a while back that two people in my life were battling terminal illnesses, both of them had lung cancer. And whilst I knew what the inevitable outcome would be, that at some point I would face the rest of my life without them in it, nothing can actually prepare you for the day it happens.

 

As regular readers of my blog will know my Grandmother passed away on January 6th this year. Then on Friday 26th January I was awoken with the news I had been waiting for all night. That my dear friend of over 20 years had passed away. In the last 12 months I have been through 5 bereavements, in the past 6 weeks three of them occurred. To say I am at breaking point  is an understatement.

 

Losing Pam, is like losing a close member of my family. We have in those 20 years been neighbours twice, when I lived at my flat she lived on the floor below. When I was being shown around the house I am currently in, Pam leaned out of the back bedroom window stating house prices would drop should we decide to move in. When we came to view this house we had no idea that Pam lived next door, as our close friendship didn’t really develop until 2007 onwards, although we had always been friends.

 

To sum Pam up in a few words is impossible, when they made her they smashed up the mould, pulverised its pieces and spread them all over the globe purely because the universe knew there was only room in the world for one Pam. She was hysterically funny, whether she meant to be or not. She had excellent comic timing and I have lost count over the years how many times she made me choke on my tea or got me to snort it out of my nose. She would do anything for anybody nothing was too much trouble. She has helped me and Jay out of many scrapes at the drop of a hat. She was like that with everyone she knew.

 

I don’t think Pam every truly realised how many people loved her. I know she found it hard to comprehend why all these different people were sending her flowers, gifts and coming to visit her. She told me she felt truly blessed and been particularly touched by a lady who she had been to school with who had tracked her down after numerous years

 

Pam knew people from all walks of life, if you ever went out with her you could guarantee she would know someone. It always used to make me laugh that when I had tradesmen at the house to fix stuff, I would find them outside chatting to Pam, she either knew them or knew their mums. It was crazy the amount of people she knew. So I have a feeling when we say our final goodbyes the place is going to be filled to the rafters with those who loved you. So many people are hurting right now, none more so than her family. I am so grateful to have known you and to have had you in my life for the last 20 years.

 

Willow

In last weeks blog post I explained that I had been looking after two poorly dogs. Whilst Frankie had recovered from his illness, Willow took a turn for the worse during the night (Thursday into Friday) and we had to make the decision to let her go with dignity. This is probably one of the toughest blog posts I have had to write in a long time.

 

At the moment it is still too raw to go into much detail, I hope that you can understand that. She wasn’t just a dog to us, she was very much a part of our little family. Whilst Jay and I are obviously heart broken she leaves behind her mother Mollie and her brother Frankie. We are all trying to come to terms with a new normal in a world without Willow.

 

Rest in peace sweet girl, you were loved so completely by all of us.

 

Willow Warbler (Morris) 7th October 2006-15th December 2017

Willow

 

 

 

 

This will be my last post of 2017. Merry Christmas and Happy New Year to you all. xx