Birthday Girl – what a pain in the neck

Well I turn 45 today! Yes 1st November and it’s the exact day of the week that I was born. Which is bizarre! And something stranger it’s Mr Myasthenia Kids birthday tomorrow. So we have two days of celebrations, eating things we shouldn’t and having a few glasses of pop.

This week has been odd as I started getting pins and needles really badly in my wrists, hands, fingers, legs and face. It’s so bad on my left wrist that I just can’t wear a watch because this seems to irritate the nerve. Annoying as I love my watch. Jay bought it for my 41st birthday and I really do love it. 

Initially I scared myself stupid by consulting Dr Google, what came up was a mixture of M.S and anxiety. Yes I am stressed but I was anxious or hyperventilating. So that left M.S but having calmed down a little I actually think the problem is stemming from my neck. I have lost the curve in my neck – to be honest I don’t think I have ever had one. A chiropractor I consulted due to back problems when I was around 16 took x-rays of my neck and said he had never seen such a straight neck. He said it was swan like. Me being vain took that as a compliment, not realising that a straight neck is a major problem and will provide you with no end of painful problems, which I have suffered with on and off since the age of 16 when I pulled a roll cage onto the shop floor at work that was way too heavy for me. I felt compelled to do it as the checkout manager ( a real nasty piece of work and a bully) stood shouting at me until I moved it. Excuse the language but my neck has been fucked up ever since.

It didn’t help that two years later my car broke down whilst I was driving in the pissing down rain, my dad ever the bloody gentleman made me get out and push it whilst he steered it into a safer location. With the road being wet I slipped and managed to sprain my neck. It was absolutely superb timing literally days before my A-level exams took place ( the exams we need to take in England and Wales to get into University, in Scotland they take Highers). I ended up having to sit through 3 hour exams with a neck brace on high as a kite on painkillers. I was given a desk at the back of the room so that I could get up and move around if I needed to. I never did, it was embarrassing enough that I had to wear a neck brace let alone draw attention to myself by moving around in a silent exam room.

A few years later and I am university and guess what? Yep my neck is causing me an enormous amount of pain. I was diagnosed with “student neck” probably now known as Text neck. Its caused by looking down and in my case reading mountains of set texts, these days it’s caused by looking down at a mobile phone (cell phone) or a computer screen. I paid out a load of money to have my neck manipulated to ease the pain.

And that is how life was for years, the last really bad period with my neck was back in 2000 around a month after our wedding and possibly a few years after that. I know I have had to attend work on quite a few occasions wearing a soft collar.

In 2016 I had an MRI to see if they could “see” my CSF leak. On the radiographers report it stated I had reversed cervical lordosis – what this means is that it now bend in my neck is bending the wrong way This link has a great x-ray image that shows a neck with the bend going the wrong way – here . 

The problem is the neck is probably the worst designed  load bearing  area of the body. The head weighs up to around 10lbs so the vertebrae, muscles and ligaments have to spend every waking hour keeping a bowling ball up against the force of gravity. Also the neck contains the spinal cord and at the very base of the skull your brainstem is encased. So anything that messes with your neck can leave you in serious hot water. A break which impacts the spinal cord at this level could mean you end up totally paralysed and unable to breathe for yourself. You’d think something so vitally important would have been designed just a little better. 

I saw my gp in July and told her that I was getting increasing amounts of pins and needles in my hands and arms. I also told her I was getting an increasing amount of pain in my neck and base of my skull. As my mum had just  been diagnosed with  “probably” cancer, I was informed by the gp that the pain and numbness was stress. This diagnosis was reached without any physical examination. Had they bothered to examine me they would have noted that I have pain from the base of my skull down to between my shoulder blades. This pain limits me doing anything sat down at a table, using my arms . Anything at all where my head maybe held in a tilted down position.

I ended up having to have a break from sewing as the minute I sat at my machine the pain in my shoulder-blade would start. I started using a tens machine on a regular basis. I got the pain under control. As long as I took a break every 15 minutes and checked my posture I could manage the pain.

Then as the pain had gone away I started sewing again, in fact quite a bit more, when I was able to. Now as soon as I sit down at my machine the pain starts. If I hold my mobile phone (cell) the pain starts. On Sunday I was chatting with a friend, nowhere near my sewing machine or mobile phone and I started to get a burning pain in my left wrist and fingers. I knew it was nerve pain and I assumed ( wrongly it was due to being deficient in B12). After she left I dosed myself up on B12 and hoped that the pain would be gone by the following day. It wasn’t. It was now down both arms and in my face. I was so frightened by it that I rang the duty dr at my gp surgery.

I must have blood tests and go in and see them towards the end of November. The doctor thinks it maybe a nutritional deficiency, thyroid or electrolyte imbalance. After having a good think about it for the past 24 hours I am pretty sure its my neck. I get some relief when wearing a neck collar.

So today my birthday will be quite a quiet affair. Spent with hubby and friends. Alcohol will be consumed mainly as a muscle relaxant in the hope I can spend the day without being in constant pain and the nerve pain in my left wrist not driving me mad!

The Pain Game

I thought that I was well and truly done with the level of pain I have been experiencing for the past ten days. There has been no let up other than when I catch a break through falling asleep due to sheer exhaustion. It’s not a horrendous level of pain probably only a 6 or 7 out of 10 it is the fact that it is never-ending that is driving me to the brink.

My hips, knees and pelvis are all currently conspiring against me, each in competition with each other to see who can hurt me the most. When one eases off another goes in for the kill. I can’t actually remember ever having pain at this level for this amount of time. It’s a bone deep gnawing pain, not enough to make you cry out but enough to make you consider weeping if only you had the energy left.

I have racked my brain trying to work out what is behind this pain escalation. As my mobility is limited it’s not as if I have taken up hill walking or Zumba classes. I haven’t fallen or  done any Pilates (since the pain started) or sat in a way that would put stress on my joints. There hasn’t been a constant change in weather fronts (the weather plays a massive role in my pain intensity) or a  change in medication. There is nothing I can put my finger on that I can say “that did it”. Pain without a cause is frustrating, as how do you avoid it happening again? I don’t mind if I have done something that causes a few days of pain. I can live with that, it is when my body is punishing me for no apparent reason that I begin to despair. When will the pain end or as in my case when will the pain subside to a level that I am used to and I can cope with day in day out?

My vast quantities of pain medication are not working, which would normally be the case if I was suffering from nerve pain. This isn’t nerve pain as nerve pain has a completely different quality. Nerve pain or my nerve pain tends to be a burning, pins and needles pain. This is deep within my bones. My hips currently feel like they have been replaced with metal spikes and every movement or position is searingly uncomfortable. My knees to be fair aren’t too bad they are a dull ache only catching me out when I go upstairs, then the pain makes me squeak. My pelvis or to be more anatomically correct my iliac crests feel like someone has taken a hammer to them and my lower back is probably painful because my gait has been so badly thrown with everything else hurting.

I know the pain is bad at the moment as I am struggling to concentrate for more than a few minutes at a time. I am also waking every 2 hours, unable to keep comfortable when lying in bed. Sitting provides some relief for around an hour and then the pain comes roaring back. I could quite honestly weep I am so worn down with it all. I just don’t know how to get myself out of this pain game at the moment as I have explored all my usual tactics and nothing is working. Heat provides a small amount of relief until I become too hot, changing positions is fine as long as you aren’t trying to sleep but nothing brings relief for very long.

Remarkably so far it hasn’t brought my mood down too much yes I am fed up but not depressed, there is a world of difference between those two states. Whilst it would be perfectly understandable for a person with long-term chronic pain to have periods of depression I am just seriously naffed off.

I can’t believe that years ago I would manage to work whilst suffering this level of pain. I wonder if I have become more aware of pain or if it is just now that I am at home 24/7 that there just aren’t enough distractions. When you are running a department of 130 people and fighting battles to be treated with dignity there aren’t masses of opportunities to let the pain in. At that point even acknowledging the pain would have meant I would have lost the war. I did it all on massive doses of codeine and later oramorph when I developed bursitis in both hips and plantar fasciitis in both feet.

I am starting to think maybe on the pain front I gave up and now I am forever fighting to be back in control. To feel like you have given up is almost too much to bear. I still have doubts about my chariot (wheelchair) I blame myself for allowing myself to give in and use it when I should have pushed through. In reality I know that wasn’t a possibility. Not using the wheelchair would mean never experiencing the outside world again. Even if all I do is now get to look at people’s arses due to my eye line. I don’t know if it is the feeling of giving up or a feeling that I have failed as a human being. That I am no longer able but dis-abled.

The first part of this post was written in the midst of a massive pain flare up. Yesterday the pain settled, possibly due to a mega dose of B12. Some doctors would argue it was coincidental but I don’t think so. Why after so many days of pain would it settle 12 hours after the injections? Now however I am having a bad bout of insomnia. Chronic illness is so much fun you never know what will happen next. I was naffed off with the pain before but now I am seriously pissed off as tomorrow, well in fact now today, I am going out for a few hours with Jay (hubby) for the first time since August (2015). And yes you read that right.

Unfortunately insomnia before a big event and believe me leaving the house for a few hours when it’s not a medical appointment is a huge event, seems to send my adrenaline levels soaring. I become really twitchy and unable to settle. I have been trying to wind down since 7pm, now 6 hours ago. I have got up, I have watched TV, I have read, I have listened to the radio, I have meditated there is nothing I haven’t done to try to drift off. Yet sleep remains elusive. The good news is the pain really has settled it is the best it has been in months. I am just cross with myself that I didn’t recognise the signs of B12 deficiency, it is not as if I haven’t been down this road before. It’s just this time my left leg didn’t start burning.

The other bonus is of course I get to finish my blog post a day earlier than normal. I get to put it to bed, pun intended and do not have to worry about being too exhausted to complete it as I went out on a jolly.

I really hope at some point the sandman visits, otherwise Jay will have a grumpy Rachel to deal with whilst negotiating the city centre pushing me in my chariot.

A general update

I know I can be terribly annoying talking about the various new things happening medically but then never going back and updating you all. Unfortunately I have the memory of a goldfish, my husband will attest to that. I forget things, I continually ask the same questions  etc. It must drive him nuts some days but he patiently answers those repeated questions.

Octreotide:
In April 2014 I was admitted into hospital for a medication trial. Luckily I escaped on the second day, the hospital setting drove me to the brink of hysteria. This was triggered by awful experiences of hospitals in the past.
I was started on 0.25mls Octreotide three times a day before meals. Whilst in hospital I suffered no side effects but with in a few days I was suffering from diarrhoea (neon yellow in colour!) and stomach pain. On the advice of my consultant I stopped the injections for a few days and then restarted them but just once a day. All went really well – it stopped my postprandial episodes, until June which was when I started getting repeated bouts of cellulitis. I decided that I would stop the injections whilst I waited to get rid of the cellulitis. I had four bouts of it in total, by the end of July I had simply got out of the habit of injecting and it fell by the wayside. My postprandial episodes had lessened so I just didn’t use it.

Last week as the episodes had come back with a bang I decided to bite the bullet and start using the octreotide again. I started off on a 0.2ml dose and that has gone really well. As there were no side effects I have increased this week back to 0.25ml, I had got up to 0.3ml before stopping it so I hope to slowly increase it back to that amount. So far so good, the weird thing is I can really feel it wear off with tachycardia coming out of nowhere once I get to the 90 minute mark after the injection. I see my consultant at the hospital in the next few weeks so I will update him them.

Fludrocortisone / Florinef:

I started taking fludrocortisone again back in February 2014 after the tilt table test sent my autonomic nervous system into free fall. Since then its been on and off until January this year when again I have taken another downturn health wise. I am currently taking two tablets a day which I find helps with the tachycardia and palpitations. It does zero for my blood pressure but if it stops the banging heart every time I move I am happy to take it. If I am having a very rough day I will increase to three or even four tablets.

Home Oxygen:

I still have my oxygen concentrator which is an enormous help to me….when I remember to use it. It is very reassuring to have the oxygen concentrator at home so that I don’t have to take a trip to hospital. There are several reasons why I use it, the first one is quite obvious I use it when I feel like I can’t breathe. This tends to happen if I am having tachycardia that wont settle even when resting. It is exhausting when your heart decides to run at a million miles an hour when you aren’t. It feels like you can’t catch your breath, so the oxygen just makes it a lot easier. On occasion it will slow my heart down as well so a double bonus. I also use it when I have a bad migraine, the oxygen seems to reduce the length of the attack and ease the severity of the pain. Since being on the fludrocortisone again I have had a lot more headaches an unfortunate side effect so I find I am using the oxygen more and more.

Back Pain:

Overall my back pain is 100 times better than it was back in August when I could barely get out of bed. I still have bad days and semi bad days usually when I overdo things however some days I can just wake up in agony. I am not brilliant at doing the Pilate’s I seem to have fallen out of the habit. I really need to get back on the case.

My back pain has also moved from being predominantly my lower back and now can be anywhere from the base of my skull down to my tail bone. For the moment I have stopped going to physio therapy as I really don’t believe that my back will get much better than it is now. I completed Pilate’s from the September to the December at a cost of £70 a month. We don’t really have the £70 a month to spend. If I can’t keep my back pain at the level it is now I will go back.

Bladder Problems:

My bladder has been doing much better since I have retrained it to wait for longer until I empty it. So far no infections which was my main concern as my going frequently was a habit I had got into due to recurrent infections. 

I have not cut out caffeine, fizzy drink, artificial sweeteners or the devils juice. This was my decision and just because I have done it does not mean that this decision would be right for you should a medical professional advise you to do the same. I knew that my problems were not related to my consumption of these items but down to a neurological problem. The bladder nurse was trying to treat me for an over active bladder due to me urinating over 26 times in a day. What she couldn’t quite get her head around was that if you drink between 6-7 litres a day you are going to pee more than the national average.

I am being taught how to self catheterise at the end of this week…..I am so looking forward to it. At least this is happening in my home and not in a hospital ward. Knowing how to do this will be an enormous help as my bladder is still refusing to empty properly or completely stop working. I am hoping that by being able to empty my bladder in this way will mean I will not need the district nurses coming around and fitting a catheter with a bag in future. Time will tell. I am sure there will be a blog post following this hilarious fun-filled episode.

B12:

I was diagnosed with a vitamin B12 deficiency at the end of the summer. I had the standard 6 injections and then was supposed to be given the injections every 8-12 weeks. After 6 injections it was clear that I needed far more B12 than was being offered on the NHS (despite the NICE guidelines informing doctors of the correct practice). As soon as the B12 injections wore off my neurological symptoms came back. So since then I have been initially injecting every other day. I then spaced that out until every 3 days then every 4 days and now I am down to once a week. Any longer than that and the burning sensation in my left leg and foot comes back. I was obviously a lot more deficient than my B12 test accounted for.

Overall Health:

As I have a hospital appointment coming up in the next few weeks to see the consultant who looks after me for PoTs I have been thinking long and hard about how I am doing. I haven’t seen my Dr since April due to a massive balls up within the hospitals admin department. Hand on heart I can honestly say my health is slowly getting worse each year, which is upsetting and a little depressing. I don’t know where this decline will end and that is scary. No one seems to know or discuss it. 

I am now starting to suffer from random drops in blood pressure when sitting. I am used to my blood pressure dropping like a stone on standing and have coping mechanisms in place for this. What alarms me about this new symptom is it is happening when I sitting with my legs raised. I will be reading or using my Chromebook and all of a sudden the screen will seem to scroll up or down. This is actually my eyes rolling in my head, within a few seconds my heart will feel funny. The only way I can describe it is that I get the sensation you have when you are falling in a dream, only I am awake. The attacks can last for just a few seconds or several minutes. I may get one in isolation or repeated attacks throughout the day. I know that whatever it is that is happening is causing my blood pressure to drop as I have been lucky enough to capture an episode on my BP monitor. This is just crazy and when I put some feelers out within the PoTs community only one person replied and said their son suffers from them.

I worry about these attacks as I have no warning that they will happen. For the moment I have placed myself on a driving ban until they have stopped for a few weeks. I feel like I am hanging onto my independence by a thread. Losing my driving licence – even though I only drive a few times a year would devastate me. Obviously having an accident and hurting other people would devastate me more. It is just that I feel that this illness has taken so much away from me I would hate to lose yet another thing.

Weight loss:

I am still sticking to my diet and I will admit it has been very hard at times. I have lost 21lbs since starting and I am just 3lbs away from what I weighed on my birthday in November which is what my first target was. I still have a long way to go, I am not even half way yet. I have found that reading my cards that I have made up with positive affirmations on them reminding me of the reasons why I want to lose weight etc have been really helpful especially on the days when I am finding it a hard slog.

One last quick update:

 This one is regarding my mum. Those of you who are regular readers may remember I wrote about the length of the waiting list for my mums spinal surgery. She still hasn’t had the operation and has deteriorated further. She saw her surgeon last week after her gp wrote to the surgeon explaining how badly my mum was now doing. Her case has now been marked as urgent and she has completed all her pre-operative tests. She is now just waiting to hear when the operation will take place. Fingers crossed it takes place soon as she really needs it.

“Can you hear me?”

I am getting increasingly frustrated with not being heard.
 
I have a good doctor but there is one symptom of mine that whenever I bring it up is not acknowledged or I feel is disbelieved. Everything else I discuss with him is accepted as part of my condition yet this simple seven letter word is just left hanging in space and I am fed up with going over the same old ground in an effort to be heard and acknowledged.
 
This symptom isn’t anything crazy it is well documented as part of Ehlers Danlos Syndrome and Dysautonomia but it is dismissed out of hand whenever I dare raise the subject. All I am trying to discuss is the bone crushing level of fatigue I suffer from after leaving the house for medical appointments or for any other reason.
 
On leaving the house I am hit with fatigue, its been going on for seven years. A medical appointment can leave me in bed for hours if I am lucky and most of the time days. It’s not just the fatigue that is an issue but also it makes all my symptoms worse. I have increased pain due to the Ehlers Danlos Syndrome and the Dysautonomia makes my autonomic nervous system go screwy. A simple 20 minute appointment can leaving me feeling like I have been run over by a car and I simply don’t bounce back.
 
Most medical professionals that I try to discuss this with either pretend that they haven’t heard me by changing the subject or make me feel like I am exaggerating my symptoms. Let me tell you now I am not making this stuff up! If I could go out everyday I would, I don’t choose to be a prisoner in my own home, my body is making me that. I don’t mind suffering the consequences of the punishment my body will dole out if I am having a good time however medical appointments are not on my list of fun things to do. I would rather spend my energy actually having a life and doing normal things. The only way I can do this is to stick to a strict routine in a controlled environment where my senses are not over stimulated and my frayed autonomic nervous system doesn’t feel like it’s under attack.
 
Also I find that doctors do not calculate into the equation, travelling times to appointments. My doctor wants me to go to the next town to have physiotherapy on the NHS. What he has failed to appreciate is that on a good day that is a 20 minute journey each way with a 30 minute appointment. The physiotherapist will want me to attend once or twice a week. That’s lovely but my body disagrees. If I go just once a week it will take me the rest of the week to recover, going twice a week means my body doesn’t recover and it sends me on a downwards spiral where I become so ill I can’t get out of bed for months. The doctor and the physiotherapist can not understand my sudden deterioration, I then have to end the physiotherapy because I am too sick to attend.
 
How do I know this will happen? Because I have done this before. I tried to play the game and attend the twice weekly physiotherapy sessions. I ended up in a worse condition than I was before I attended. It’s not just the travelling and the appointment that is the issue. If you end up with a physiotherapist that can’t get their heads around the autonomic issues and demands you increase your walking by 10% each week you are on a hiding to nothing. It doesn’t matter how much you tell them about your condition they just don’t hear you. It begins to feel like they think you like using a wheelchair etc. You aren’t then just using energy travelling and attending the appointment you are wasting energy on a person who refuses to listen to you. If they can’t understand the danger with getting someone who has orthostatic intolerance or faints without warning  to increase the length of time they spend walking then what’s the point? I am thoroughly sick of it.
 
When I explained to my doctor that the physiotherapy was making me worse I felt ignored. I was told that I was just going through a rough patch and once through it I could start again. I never emerged from that rough patch and my conditions steadily got worse.
 
Dont get me wrong I like my doctor there are many things that we see eye to eye on and he is my go to guy. He just fails to appreciate the havoc my body creates when made to leave my home. He didn’t get it when I had to have 6 vitamin B12 injections over two weeks, that this would put me in bed for days. I asked if the District Nurse could come and do them I was told that as I was  not strictly housebound that I would have to go to the surgery. I understand that the District Nurses are extremely busy and have many patients to see but this meant for the whole two weeks I rarely left my bed. The nurses I saw at the surgery could see with each session my health was deteriorating and were furious. I couldn’t understand either why I was not being allowed to self inject when I already inject octreotide (a far more dangerous drug that vitamin B12) everyday. It made absolutely no sense. Unfortunately its something my doctor didn’t see so obviously its just a figment of my imagination.It’s incredibly frustrating.
 
This situation with being disbelieved has happened again this week. I needed to ring my gp about increasing my slow release morphine on the days when my back is bad. That was no issue at all. He then asked me how I was, I explained I had seen my neurosurgeon, I read him the MRI report and then told him I had been in bed ever since the appointment (at this point it had been 24 hours and for a lot of those I had slept). I swear to god I could hear his eyes rolling! 
 
I think some of the problem is that when I see someone and it doesn’t matter how ill I am (unless it’s a situation like in June where the temporary catheter was blocked and my bladder was in spasm) I will be bright and breezy because I am genuinely happy to be interacting with another human being other than my husband. I can go weeks without seeing anyone but him and although obviously I love him very much, it’s nice to have some social interaction. The fact that as soon as the interaction finishes I go back to bed or back to sleep is something they don’t see. I really wish they did. 
 
Sometimes I wish I could pull off a dying swan act just so they would appreciate how sick I am but I just can’t, it’s not me. Years of dealing with colleagues and the general public has ingrained in me a “happy face” and a pleasant demeanor when dealing with people. Very few people see the real me, the days when I can’t cope with all the crap that’s being thrown my way and I just want to cry all day everyday. I know through my immense dealings with the medical profession for them to see me like that would mean they would blame it on depression and then it would be an uphill struggle to get any symptom acknowledged as it would all be blamed on that.
 
I am dreading starting my spinal rehabilitation physiotherapy due to the fact I don’t know if the physiotherapist is going to believe me when I tell her I can’t come every week. However at least this time the journey is only 5-10 minutes away depending on whether we get stuck behind a tractor or not. Plus this time I am paying for the treatment myself which means I get a bigger say. I am going to be printing off and taking with me medical papers on Dysautonomia and Ehlers Danlos syndrome for her to read. I hope she does otherwise I will be saying to myself yet again “can you hear me?” when the subject of my fatigue is ignored.

My visit to the Neurosurgeon

A week or so ago I saw a neurosurgeon regarding the awful pain my back is causing me that also radiates into my legs on a bad day. I decided to pay and see him privately so I avoided the obligatory physio sessions that you have to have on the NHS before you get anywhere near a neurosurgeon.


My back has caused me problems all my life. Since the age of 16 I have herniated discs. I had to sit my a-levels wearing a soft collar because the week before the exams started I had to push my broken down car out of the way of traffic. Whilst pushing the car I slipped and that was all that was needed to provide me with a few weeks of horrendous pain. Not great when all of the exams were at least 2 hours long and would be sat at a desk. My doctor at the time provided the exam boards with a note to give me special consideration as I was answering questions through a haze of painkilling medications and I was also allowed to be seated at the back so that at regular intervals I could get up and move around without disturbing the other students.


In 1999 I injured my back severely during a cool down after an exercise class. Again I had herniated a disc and was in severe pain for several weeks. Unfortunately I worked for probably the most unsympathetic boss ever who despite being informed of my injury still expected me to charge around here there and everywhere with gusto. 


This back injury had lasting effects – the side of my left foot went numb and from then on I have never been able to ride a bike without my nether regions going numb. Thats probably too much information for some of you but I like to be completely honest. When I saw a gp regarding the bike riding issues I was laughed out of the surgery. I recently discussed this with my current gp, one of the good guys and he was flabbergasted that such an issue would be treated in this manner. He had no issue at all sending me for a private referral and understood my reluctance to be treated by the same physio I had a few years earlier, who claimed to be a specialist with EDS but had no understanding of autonomic nervous system issues.


I had to pay £185 for the privilege of seeing my neurosurgeon, which in the world of private appointments is small change. The most I have ever paid was £430 for a private MRI and the most I have spent on a private consultant is £300. My eyes are watering as I tot up the amount I have spent outside the NHS since 2007 trying to find answers for my health issues. If only I had known I would find my own answers through Google! However it was still a battle trying to get referred for the appropriate tests on the NHS.


The neurosurgeon I saw works out of a tiny clinic in a village less than 15 minutes away from where we live. Travel is a nightmare for me so to avoid having to go into the city was a bonus. Parking was easy unlike the large hospital where if you arrive after 9am your chances of getting a disabled parking spot are virtually zero.


The Neurosurgeon greeted us at reception, he seemed very hands on unlike all the other consultants I have seen either on the NHS. All the other consultants I have seen regardless of who they work for seem to send someone else out to fetch their patients. My NHS hospital consultant always comes out and gets me, I find that is a much more approachable way of doing things instead of immediately creating a barrier between patient and doctor. It was a long walk between reception and his office so I was immediately regretting using crutches instead of my wheelchair. The building itself had seemed quite small on the outside, inside however it was labyrinth like.


We reached a tiny little room at the end of a long corridor, where immediately the doctor took our coats and hung them up on the back of the door. Inside was a desk 2 chairs and an examination bed and the obligatory model of the human spine! 


It was nice to know that the doctor knew my own gp on a personal level and he also had the same air of familiarity about him. I was asked the question that irritates me the most “do you work?” and I explained that I hadn’t since 2008 and the reasons why. For more info on my feelings related to that question please go to the blog post “Do you work?” at blogger or WordPress . 


We then had a quick run through of my symptoms and I was asked to gauge out of 100 my back pain assigning one percentage to my leg pain and one percentage to my back pain. Initially due to my issue with numbers in general due to my dyscalculia I didnt get what he meant. Which made me look a wee bit silly. So bless him he explained it in a clearer way for me. “Eureka” I’ve got it! I explained the majority of my pain was felt in my legs I assigned 70% to this and then gave the remaining 30% to my back. Now although I wrote in my post about B12 deficiency WordPress / Blogger that my leg pain reduced after my first B12 injection it hasnt gone and on a bad day it is still unbearable. The bad days have no correlation to my loading doses and my left foot is still numb. I know its early days with the B12 treatment as you continue reading you will understand that there is an issue with my back and that is causing some of the pain in my legs.


Once he had gone through the various questions he needed to ask me I had to be examined. Luckily it was just a case of removing my shoes and my top not exactly a comfortable experience. He asked me to point on my spine where I felt the pain. He then poked and prodded my back asking “does this hurt?” as I squealed in pain and tried to peel myself from the ceiling. He then asked me to bend forward and touch my toes. Now looks can be deceiving, I am not the trimmest of specimens and logic would say I would be lucky to be able to reach my knees. However due to the Ehlers Danlos Syndrome I placed the palms of my hands flat on the floor. The dr responded with “blimey you are bendy!”


I am sure many doctors see the diagnosis of EDS and don’t quite believe how flexible we are, especially if like me you are a little on the large side. I am incredibly flexible and my back is probably the bendiest bit which is why it gives me the most trouble. He then took me through the Beighton Scale, almost as if to re-confirm the diagnosis. As I know what the scale is I threw in a few extras for free just to freak him out! My Beighton scale has been upped now from a 7/9 to a 9/9 as previous doctors didnt think my elbows were hypermobile. This doctor did but it just goes to show how subjective the scale is and how it should really be measured with instruments rather than the naked eye.


Having “proved” once again that I do have EDS I was then made to lie on the examination couch. I had to do various exercises like push his hand away with my big toe and then with my feet. All went really well until I had to elevate my legs. The right one went up so far and so quickly if I had not been careful I could have bashed myself in the face. Its not something I ever do at home so I wasn’t expecting the left leg to be any different. Bizarrely I only managed to lift it a little before it became stuck and would move no further. The doctor must’ve seen the look on my face because he asked if I was in pain. The answer was no, my face was displaying sheer panic. It just wouldn’t move any further and was stuck. It caused no pain at all. Its very hard when you are used to your limbs being elastic and they suddenly aren’t the same anymore.


Examination complete he asked me to get off the examination couch and get dressed. Thats where the fun started! When I get up from a lying position I have always found it easier to roll onto my side and lift myself up. Only my back was having none of it and my arms werent much use either. I lay their stranded like a beached whale. He offered to help but I declined embarrassed that I couldn’t do the simple task of sitting up. After what seemed like an eternity I made it to a seated position. This was still too quick for my body and I ended up having a pre-syncopal episode. 

Once I finally made it back to the chair he took out the model of the spine and went through what he believed was wrong. Apparently I am showing the classic signs of Facet joint arthritis. At 40 I am a little young to have this condition (its mainly found in people over 45 who have been athletes, dancers or done hard manual labour) but EDS can cause early onset arthritis. I suspect I have a touch of arthritis in my fingers also as they can be very stiff and painful on waking. He then went through my back / leg symptoms and said they were all pointing to a nerve root compression at S1. The fact I couldn’t lift my leg was a textbook symptom. Luckily all my reflexes are intact, my mum who has the same problems as me is much worse having lost the reflexes in her leg and therefore requiring extensive surgery.

He then went through the various treatment options however we will know more when I have an MRI scan later this week. I will be booking an appointment to see him once its been done, thats another £130 privately. I could be waiting several months on the NHS for an appointment to do exactly the same thing.He will then go through the results of the MRI scan with me.

Its really stupid but I am terrified that the MRI will show nothing at all and I will be accused of making up all my symptoms. Its a pretty expensive way of getting attention but thats not what is going on. My phobia about doctors is just kicking in and although I know I am showing textbook symptoms I can’t shake the element of doubt rattling around my head.

My options are depending on how bad the damage is  are injections or a nerve root decompression operation. The nerve root may need to be decompressed on both sides of the vertebrae as I am developing symptoms on my right side also when its a bad day. The doctor informed me an operation like this doesn’t come without risks and he would go through them at a later date. He is sure however should I have an operation the pain will be gone when I come around from the general anaesthetic.

My operation would be carried out on the NHS, I just don’t have the funds to pay for it myself. The surgeon also works for the NHS and would do the operation himself rather than pass me off to another surgeon. I told him if I had the operation he would be the only one doing it. I asked my gp when he referred me to this surgeon who he would have treat him. He answered this neurosurgeon, I trust my gp’s judgement.

At the end of my appointment the Neurosurgeon warned me that after the examination I would be in pain, he wasn’t wrong. I ended up having a flare that lasted three days (where the pain was close to being a 10/10 on the pain scale) and it’s taken until today (15 days later) for it to completely settle down. When I say settle down I don’t mean zero pain, I mean a pain that I can deal with and that goes away with additional painkillers should I need them.

Since the examination I have found that there are now things that are acting as triggers and exacerbating the pain. Bending forward is causing a lot of back pain and I am locking up more frequently when I try to straighten up. Maybe its just because I am more aware of the issues with my back where as before I adopted the head in the sand technique who knows?

Of course I will update you once I have had the scan…….

Willow keeping company whilst I recovered in bed after the appointment.

 

Anxiety

I have always been quite an anxious person, culminating in an anxiety overload and a major bout of depression back in 1999. It took me a long time to get a grip of them through Cognitive Behavioural Therapy and pharmaceutical means. For a very long time I had considered anxiety and depression a thing of the past and then Friday 8th August my old foe anxiety / panic attacks came back with a vengeance.


Those of you who are regular followers of my blog know that I have been having treatment for B12 deficiency. Anxiety and depression can be a symptom of low B12 levels. That wasn’t the case with me, my symptoms were pins and needles in my hands and pains in my legs. Both symptoms were worse on my left hand side.


To treat the B12 deficiency I had to have injections every other day (or as close as I could) of B12. My initial treatment was limited to 6 injections which doesn’t follow any of the best practice guidelines but seems to be how those who are B12 deficient are treated in the county in England where I live. It has meant enormous upheaval for both myself and my husband getting me to and from appointments. Not helped by the fact my dogs have a voracious appetite for furniture if they are left alone. Some days my husband has been able to come with me, other days I have had to take a taxi alone.


Fridays injection would have been my fourth with two more scheduled the following week. I was going to take a taxi down to the surgery and if possible get one back home. All was going well until a few hours before I was going to leave for my injection. Out of the blue I was filled with a sense of panic. This is quite unlike me and the more I tried to calm myself down the worse it got. I simply did not want to deal with people or to leave the house. I had no knowledge of what the perceived dangers that lurked outside were, I just knew I could not go. As silly as that may sound to people that have never experienced that kind of thing.


The night before had been filled with nightmares, I had slept but on several occasions I was woken up by the sheer terror of what had played out in my dreams. The first dream I remember was I was involved in a plane crash. I am terrified of flying a phobia that has got worse over the years, so for me to be on a plane in my dreams is quite laughable it just wouldn’t happen. The next dream was my house was enveloped in a swarm of bees. I was alone in the house and no matter how quickly I ran from room to room shutting doors and windows the giant bees (they weren’t normal sized ones) threw themselves against the glass. I was filled with panic as I searched every room for my dogs trying to ensure their safety. As the swarm entered the house the dream obviously became more than I could handle and I awoke (again) with a start. Not a pleasant night….which has been followed with a night of insomnia what joy!


I mentioned my vivid dreams to my husband the following morning who remarked it was odd that I had suffered from nightmares as I normally never remember my dreams. Looking back now something was obviously troubling my unconscious mind. The plane crash was obviously my overly acute fear for my safety. It could be suggested that the plane some how signified the medical situation I was going to be in the following day but I think thats a stretch. The swarm of bees I think signified the danger of the outside world. Shutting doors and windows was a way of protecting myself from that danger. Who knows these are just the ramblings of someone who hasn’t slept so far tonight. Its coming up for 2am in the UK as I write this.


As I said earlier I felt fine in the morning and really didnt give the dreams anymore thought until discussing the days events with my husband later in the evening. 


I loath feeling anxious about nothing specific. I couldn’t tell you what the threat outside was that so filled me with dread. I sat on the sofa for over an hour wondering what the hell to do. I didnt want to miss the appointment, mess the dogsitter around or give in to my fears. No matter how hard I battled I just couldn’t get in control of my fear. In the end I rang my husband at work something I try and avoid doing as personal calls are frowned upon. I talked through what was going on in my head. 


Luckily my husband has also suffered from panic attacks and anxiety in the past. He asked me if I knew what I was afraid of, told me that cancelling wasn’t the end of the world. He would now take me to all my appointments and we would manage. It was so nice to hear his calming voice at the end of the phone. He asked me if I wanted him to come home, which I didnt need because the anxiety was about leaving the house. As long as I remained inside these four walls I felt safe.


By the time I had called my husband and cancelled everything else I was exhausted and slept for 2 hours solid. Its probably why I am unable to sleep tonight. I felt a wave of calmness start to wash over me and when I woke up I felt like I was back to being me again. The whole thing had seemed very odd and surreal. I have had that kind of fear before but not for many years and it troubled me as to why it had suddenly raised its ugly head again.


CBT taught me to analyse and explore my feelings so I spent the rest of the day trying to figure out what had caused this reaction. My husband had already told me during my call to him he felt it had been triggered by a mixture of tiredness and the fact that I so very rarely go out alone. Plus I was going out alone into a medical setting. Medical settings always trigger an element of fear but I can normally control it. The more I thought about it the more I had to agree with him.


For normal people going out by yourself is something you do without a backwards glance. Before I got sick I would go out regularly unaccompanied. I would drive to see my family and friends. I would pop into town to do some shopping. Leaving the house by myself was not an issue. Since 2008 I have very rarely left the house alone. It has almost become that my husband is now my safety blanket, or anyone else who is with me when I leave the house. I feel very vulnerable now when I am in the big wide world. Before I felt I could handle myself in any situation. Now the world is full of fear for me. Fear that I could pass out or fall whilst out in public. Fear of being abused because of my disability. Fear that if someone should physically attack me I wouldn’t be able to fend them off. Things I rarely considered when I was well unless I was walking in an unlit car park late at night going back to my car.


It is not my fear that stops me leaving the house it is my physical disability. I need a wheelchair if there is going to be any walking involved or if there will only be a tiny bit of walking involved I can get away with crutches. Crutches come with a price though as my shoulders, elbows and collar bones complain for days on end afterwards. So with my limited mobility I always need someone with me. Someone to push my wheelchair or someone to drive me right to the door of wherever we are going.


Going out accompanied I never have any fear. I don’t feel vulnerable or fragile or less of a human being. Alone I feel all of those things.


In the last few weeks I have been out of the house more times than I have been in months. I was ok the first time I went out alone but I just couldn’t do it Friday. I am angry with myself for being such a coward and giving into my fear. I am annoyed that I didnt put my CBT into practice and try and rationalise the fear. 


The problem is CBT only really works if you know what specifically it is that you are afraid of. That way you can explore the issue, rationalise your fear, work out “well what’s the worst thing that could happen?”, how you could prevent the worst thing from happening and how realistic it is for it to actually take place. When the fear is unspecified you don’t know what the worst thing is. There was no voice in my head telling me what I was afraid of. I just knew I didnt want to leave the house and the thought of it was making me anxious to the point of being tearful.


Sometimes I really don’t appreciate all that I have been through since getting sick. I dont give myself enough credit for achieving the things I have. I am determined not to let this little set back make it impossible for me to leave the house again. I will go out alone again just not for a little while whilst I work through what the possible triggers were and why the fear was so all consuming.


I just need a little time to build my confidence back up and move on from the events of Friday.

 

My latest obsession

For those of you who follow my blog or maybe just read about my B12 deficiency, you will have read my confession that I am currently addicted to the television programme Scandal. I only started watching it a little over a week ago and I have managed to watch both Season 1 and 2. Thank goodness Season 3 started airing in the UK (Thursday 31st July ).

Its not just the plot lines that I love to follow or that Shonda Rhimes is a tv genius. I am a massive fan of Grey’s Anatomy as well. Its just I seem to have developed an obsession with Kerry Washington’s wardrobe and makeup. Lyn Paolo who style’s Miss Washington for the show, can work for me anytime I win the lottery and I doubt even then I would ever be able to afford her skills.

Olivia Pope, (the character Kerry plays if you haven’t seen the show) looks flawless at all times. Lounging around in her apartment drinking wine and eating popcorn she wears silk lounge pants with co-ordinating camisole vest and cashmere hoody / hooded cardigan. The closest I get to that kind of perfection on a lounging about the house on a day like today is a pair of battered old yoga pants and a fraying t-shirt that I will not throw away because it is too comfortable.

A visit to see the President of the United states she is dressed in gorgeous 3/4 length sleeve coats, perfectly tailored trousers and co-ordinated jackets. Olivia Pope is not high fashion she is old school fashion, she is stylish, demure and classy. She wears the kind of outfits I can only drool over while I watch her on the TV screen.

My obsession with what Kerry Washington wears whilst acting in Scandal is getting a little strange. I have never seen someone dress so perfectly and not one outfit where I have wanted to shout at the TV screen “what are you wearing?” Its just bizarre. Its not a girl crush I am just in awe at the beautiful wardrobe. The understated makeup, the perfectly manicured fingernails, the confidence, the beauty. Ok I admit it does sound like I have a crush on her.

It is the kind of style and fashion I can only aspire to. Nothing in my wardrobe would come even close to the effortless elegance played out before me. Its quite gutting really. Olivia Popes wardrobe is mainly from Max Mara and Dior but plenty of other fabulous designers have also been featured such as McQueen and Prada.

I have always liked fashion as a teenager. I never wore the “in” thing, I knew the “in” thing that all my friends were wearing was at least one season behind, the designers runway shows. You could say I never played the high street fashion game.

In my family you wore things that were practical and that would last. When you buy items that are practical and will last it means you choose carefully. You don’t pick what is in fashion now because in three months your contemporaries will be wearing the next “hot” thing. I bought things that would last and would form part of my wardrobe for not months but years.

I never had the budget for clothes afforded to the cast of Scandal but I bought wisely. I never bought cheap clothes that would form part of my year round wardrobe. I bought cheap t-shirts but not so cheap that they were see through or not wash well, cheap jeans as long as the cut was flattering for my figure and the occasional cheap item that I just couldn’t resist. I liked my fashion to be classic not frumpy and definitely not fussy. 

My signature was funky shoes. I was never really one for high heels unless you could guarantee that at some point in the day / evening I would be able to sit down. High heeled shoes have always been absolute torture to me. So I liked my funky shoes that were the complete opposite of what everyone else was wearing.

My fashion bible at the time was a book called “More Dash Than Cash” which gave great advice to anyone who wanted to appear they had money / dress well with just a few key pieces in their wardrobe. I had vogue on subscription and I would often top up my high end fashion fix with Harpers and Tatler. 

I grew up during the age of the supermodels. These girls were thin but didnt look anorexic, they had curves and boobs unlike the waifs that followed after them. I think my obsession with fashion started to wane when heroin chic took over. The girls were just so impossibly thin, Cindy, Naomi, Christy, Linda and Claudia were almost attainable. The waifs were just a step too far.

My flirtation with fashion ended when life was too busy for me to care too much. Even though I let my shoe and clothes obsession go, I never left the house looking anything less than perfect. My hair was always freshly washed and I wore a full face of makeup even during the summer months if I was stepping outside the house. A far cry from what passes as presentable these days.

I still appreciate good fashion / style, so I sit in anticipation of what Olivia Pope will be wearing next. I can only dream of having a life like that or a wardrobe that gorgeous. Most of my days are spent deciding whether I will shower or get dressed or if I am being adventurous maybe both.

Somewhere in this journey I just stopped caring about what people thought of how I looked and started being comfortable. Three dogs and black wool trousers, hell black anything just doesn’t go, unless you like the dog hair look. I don’t wear white because you can guarantee before leaving the house I will have spilt something down myself or a muddy / dirty dog will have jumped up on me.

Its been so long since I have worn makeup on a regular basis that the feel of it on my skin is alien to me. Comfort is my main priority these days and if I’m not comfortable I don’t wear it.

My skin has changed considerably since getting sick. My skin was sensitive before but now its uber sensitive. I have to stick with brands I know won’t cause allergic reactions that will take days to subside. My skin has always been dry but its much worse now. Where as I could get away with moisturising once possibly twice a day it now needs regular attention. If I am planning to wear makeup my skin takes days to prepare because makeup dries it out so badly. I can’t wear any makeup with added moisture in because my face just looks like an oil slick after a few hours. You can see why I rarely bother it’s just not fun anymore.

Clothes are now boringly practical, easy to wash and take care of. They also need to be easy to take on and off. My main item of clothing is jeans whatever the season. Jeans and a jumper, jeans and a t-shirt its easy, practical and hardwearing. There is nothing classic or elegant about my wardrobe. Another mainstay are my yoga pants. I own one skirt and one dress. I don’t do dresses or skirts I never really have. I wore them a lot  in the early 1990’s when I was told I looked like a plain clothes police officer. Then after that I ditched the whole skirt thing as plain clothes police officer was not the look I was going for. I would say my look now is probably slob at worst barely put together at best.

So Scandal fills that void in my life. To be able to adore the clothes and not having the hassle of trying to put the look together myself. It works for me.


Not my favourite looks but some great examples of the wardrobe

How sad I found a website that shows every one of her looks in Scandal! From slide 62 onwards are some of my favourite looks

Some of the “cheaper” pieces of Max Mara! I maybe at a push could afford a jumper! The coats are things of beauty.