The last post of 2016

So here we are the last post of 2016, in some ways the last year has flown by in other ways it has been a drag (endless days of head pain will do that to a girl). One thing I did learn this year, well actually I learnt quite a few things this year. One of them being that medical staff do not warn you of the laxative effect of a caffeine infusion. But enough of the toilet humour that I always manage to sink to!

This year I have learnt the power of friendship, that dreams can and do come true. On 26th May 2016 I published Pipe Dreams Part One http://wp.me/p4zBAs-hj  and discussed my wish to raise enough money to purchase a new wheelchair and power trike attachment so that I could go out with my husband when he walked the dogs on Woodbury Common. Never in my wildest dreams did I believe that I would achieve this just over 3 months. On September 9th 2016 I took delivery of a second hand wheelchair and Power Trike attachment which I talked about in Pipe Dreams Part two http://wp.me/p4zBAs-jD .

To achieve my dream hubby had his back waxed and raised well over £1,000. I am so proud of him for doing this as I have seen him both cry like a baby and swear like a trooper when having his legs waxed for BBC’s Children in Need, many moons ago. He is my hero and if you fancy watching the video’s of him being brave and getting it done you can see them here in my blog post The Things You Do For Love - http://wp.me/p4zBAs-iL

When I first got the Power Trike attachment I promised that there would be a video shortly something in which I have been remiss. Various things have got in the way of putting a video on line, health, getting used to driving it and on my last venture out falling out of it and hurting my back. This Christmas I decided that I would venture out with the dogs on their morning walk. So later than promised here is a short video with commentary provided by Mr Myasthenia Kid aka Mr Morris.

I want to say thank you to everyone who raised the  money, Abbie Wilson who gave up her time and her beauty studio to wax Mr Myasthenia Kids back, my two fundraising helpers Sharon Ross and Imogen Clark. Without you all none of this would have been possible, thank you. I would also like to thank Emmey Lou for her invaluable help, along with her husband Mike.

So this is the very last post of 2016, I feel sad that the year is over already, I feel like I need another run at it.

So I wish you all a very happy 2017, may your dreams come true, may your health improve and may you love those in your life with all your heart. See you in January 2017.

Merry Christmas 2016

Merry Christmas to all my blog followers, thank you for another fantastic year. I hope you spend Christmas with those you hold dear as I will be.

As I know many of you will be crazy busy up until the big day itself I thought I would do more of a photographic blog this week, so you can see some of the cherished decorations in the Morris / Myasthenia Kid household.

The Tree

The Nativity Scene

The Christmas Lantern

The Christmas Village

Vintage Christmas Lanterns

My Christmas tipple of choice!

Have a wonderful Christmas!

Happy birthday Sharon xx

Broken

For the last few weeks I have been left wondering how you fix something that seems broken beyond repair? How do you move past the anger and pain? How do you get to a new normal? I am left scratching my head trying to work this all out. I have had to deal with so many broken things, body, mind and relationships that have fallen by the wayside. When do you say enough is enough?

Before anyone psychoanalyzes this one, hubby and I are fine, perfect in fact. This year he has provided me (as he always does) with unwavering support through this difficult year. I can’t thank him enough for that. There have been days where he must have been almost hysterical with fear because I was so sick but he stayed strong. He made sure I knew I could count on him when the chips were down and there aren’t many people these days that I could say that about.

For 9 years I have had to deal with a broken body (well since birth but it really raised its ugly head 9 years ago) and on the whole I am fine with that. Of course there are days when I ask “Why me?” or I think that I can’t possibly go on but I do. I can forgive myself those moments of weakness or perhaps vulnerability is a better word. Even though pain wise this year has been horrific I am still managing to do things to make myself happy and enjoy life. I think that is something to be proud of.

I have in the last nine years had to deal with many broken relationships. People I thought would be friends with forever have dropped by the wayside but not before treating me like crap. I should take some of the blame here, not because of ill-health but for allowing people to treat me that way. I am an incredibly loyal friend and will excuse bad behaviour up to a point. However at some point a line in the sand has to drawn, it just I can take a bloody age getting there. When I do though the fallout (pun intended) can be catastrophic, people don’t like being confronted with their bad behaviour. I am not for one instance say this believing I am perfect, I am not. When bringing up the subject I always say “I am sure there are things I must have done that have annoyed you”. I give them the opportunity to address issues so it’s not one-sided because if things are ever going to be put right the exchange has to be honest.

Maybe because by the time I deal with the situation there have been a series of events, such as not contacting me unless I contact them, not coming to see me (I can’t go to see them as I am virtually housebound although I would love to), being rude or overly critical etc, etc I have the examples to hand, they are on the back foot unprepared for the conversation? Because for so long I have let things slide and given them the benefit of the doubt. I know that something must’ve happened for them to change the way they have treated me. However from my side it seems the more I do for someone, the more they expect, then because I am forever trying to please them, I get taken for granted and the friendship gets abused. My inability to nip bad behaviour ( what else can you call it?) in the bud seems to give them the green light to walk all over me.

I hate confrontation with those who are close to me, I am too worried about hurting their feelings that I end up not expressing my own. I wonder if it is because of all the bullying I faced during my childhood that I don’t want to rock the boat and tell the person what they are doing is not ok? I can be loud, brash and seem to have endless self-confidence but really I am an anxious hot mess a lot of the time. I worry over stuff that shouldn’t be worried about, I worry late into the night about things that haven’t happened, I can get into a rut of worrying that can be a difficult cycle to break. I know it’s not healthy to be anxious or to be afraid of expressing what you want or need. Most of the time I am not worried about what I will say but what will happen once it’s been said, as the words can not be unsaid. I should however start putting myself first and starting from now that is exactly what I am doing. I will no longer have people riding roughshod over my feelings in an attempt to make themselves feel better.

At the moment I am only filled with anger, I know that is clouding my judgement. The extent of the anger only reinforces the hurt I have felt and the fact that I do care deeply about this friendship. If it had been anyone else they would have been told to go once this pattern of behaviour seemed to establish itself. I have asked myself the question over and over did I do something to deserve this? Have I ever done something to deserve this and does it make me a bad person if I cannot think of anything but the times I have bent over backwards and supported you?

In some cultures when an item is broken like a china bowl, they fill in the cracks and cover the repair with gold leaf, to make it unique and more beautiful than it was before. I wonder if that is possible with human relationships as I am not without hope on rare occasions.

So I find myself now in a situation where the conversation has been had but now I am unsure of where we go from here. It no longer feels the same which is something I never thought I would say. Do I concentrate on the good times which account for 98% of the time and ignore the 2%? Is it worth resuscitating, this hollow corpse of a friendship, which it has been for a while or now because apologies have been made do we forge a new relationship? I am unsure that I want to open myself up again to the risk of being hurt so badly, picked up again only to be dropped when something better comes along? Do I try to forget what has happened or do I forgive but never forget? Does shared history count for anything? Is I am sorry, enough?  When is it broken beyond repair?

Eventful

On Thursday 1st December I had my 6th Caffeine infusion. To say it was eventful would be an understatement. What has previously gone ahead pretty smoothly other than being unable to cannulate me without multiple attempts was littered with potentially dangerous errors. I am still in shock to be honest.

Over the few days leading up to the infusion my head was letting me know it was long overdue. By the time Thursday came around my head pain (from a csf leak) was reaching a 7 out of 10 on the pain scale within seconds of getting upright. By the time I reached the ward I was dry heaving, which happens when the pain gets to a certain level. I had felt sick before leaving the house and had taken my anti-sickness medication hours earlier but they had done nothing. All I was relying on to prevent me from blowing chunks were deep breaths and they were becoming ineffective.

On arriving at the unit I advised them of the fact I wanted to be sick, several times. My request for anti sickness medications went unanswered so I demanded a bowl as I didn’t want to puke all over myself when I didn’t have a change of clothes with me. In every other hospital situation I have been in when I have told staff I needed to be sick they have sprung into action. Here I was asked by one member of staff if I had a hangover, I don’t drink, well it’s easier to say I rarely drink. I had drunk two bottles of Budweiser the night before as my head was bad and it was a last resort but it wasn’t enough to give me a hangover. I calmly explained to the member of staff, the same member of staff I have been seeing since June (every month) that when my head is bad I will be sick. He knows who I am as he then asked me how my birthday had gone and laughed about the fact Mr Morris had booked me a dentist appointment on my birthday. So he could remember that but not the issue that I come in and see them for every month.

This time it was on my notes that I had to have an ECG, whilst wiring me up I was given a sick bowl. The battery was out on the machine so the nurse had to get a new one. Whilst she was gone I dry heaved into the bowl, bringing up no more than a couple of teaspoons worth of saliva. The dry heaving was automatic, I had no control over it, yet when the nurse came back she demanded I lie still so that she could do the ECG. Believe me it gets worse. Anyone with a modicum of common sense would have sorted out anti-sickness medication so that I didn’t want to dry heave during the ECG but no she was getting the ECG done and I wasn’t to interrupt with anything so petty as throwing up.

Finally after what seemed like an eternity I was presented with two tablets in a paper cup. I looked at them and I don’t know what happened but I asked the nurse what it was. A lot of the time I wouldn’t do this, many patients don’t and just assume what they are being given is correct. So let this be a lesson to you, accept no medication without asking what it is. Nurses / doctors are only human and make mistakes. The nurse told me it was ondansetron, a medication that I have suffered a hideous allergic reaction to when given via IV in 2014. Now this nurse (same one as the ECG nurse) had just put my red wrist band on, the one that alerts staff to the fact the patient has allergies so they must check their notes before issuing medication.

I carry with me at all times a mini medical file which contains the latest letters from my consultants, my prescription list (I can print off from the doctor's surgery) and a list of my drug allergies as I have quite a few. Every time I arrive at this unit they ask if I have allergies, I give them the list, they scan it and the same receptionist tells me every time that I won’t need to bring it with me next time. On Thursday she just asked if I had allergies and printed off a red wrist band. I assumed that the allergy list was in my notes. After I pointed out I couldn’t be given ondansetron she checked my notes and surprise, surprise my allergy list wasn’t contained within the file. So my hospital buddy Sharon found it in my bag and gave it to her. Sharon was sat in shock that potentially this nurse had nearly just killed me. Sharon is a veteran of hospitals and said “I never ask what they are giving me, I just assume it’s right”. I told her over the months of me coming to the unit I had heard them give patients ondansetron as the anti-sickness medication of choice. It is probably the cheapest and I don’t blame them for that but not everyone can take them and before issuing a patient wearing a red wristband it might be an idea to check their allergies. If they don’t ask you demand to know what medication they are trying to give you. I don’t want to sound melodramatic but I might not be alive today if I hadn’t have asked the question on Thursday.

As I couldn’t take ondansetron, I was given cyclizine a medication I have taken numerous times before with no issue. In their wisdom they gave it to me in tablet form despite me telling them I wouldn’t keep it down. I had stopped drinking at this point despite my tongue sticking to the roof of my mouth as I was so dry. When I tell you that I am not going to be able to keep a medication down I am not pissing about or trying to be difficult. They ignored me, so I took the tablet and promptly threw it up much to the nursing staffs surprise.

I won’t lie I had come into hospital on Thursday fully expecting a fight with a nurse I shall refer to as Dick. Dick seems to have a problem with my wheelchair and will move it away from my bed and put it in the next room claiming it’s in the way. As my chair will cost £2,500 to replace I have an issue with it being left unattended. He even has a problem with my old wheelchair insisting it is folded up and moved away from the bed. He also won’t provide my hospital buddy with a chair let alone my husband so they always use my wheelchair.

Sharon had witnessed this nurse's behaviour during my last caffeine infusion. She knew from our conversations over the last month that I wasn’t going to accept this from him this time. To me it seemed to be disability discrimination, he also has a problem with the walking stick I bring to help me transfer from my wheelchair to the bed. I was fully ready to get PALs involved if he kicked off this time. Much to our disappointment  Dick wasn’t on the ward when Sharon moved me through into the unit so by the time he came back from his break, she was fully ensconced in it, at the foot of my bed using it as a chair. We were pissing ourselves as we could see he was seething that we had got it past him. This entertained us greatly whilst we were there and the junior doctor we spoke to who managed to cannulate me first time whilst I was waiting for the cyclizine to come. Although he didn’t say it in so many words he also thought Dick was being a dick about the wheelchair.

The room in which I receive the infusions is pretty small, it has six beds and then a desk by the door where the nurses and doctors do their admin work. I don’t know which doctor it was that had to do the prescription for IV cyclizine but he was kicking off that they hadn’t done it IV to begin with when I was telling them I wouldn’t keep the tablet form down. So someone in there does have some common sense. I also heard the same doctor getting excited about my ECG asking the nurses who was in with sinus tachycardia, the nurse dealing with me told him “she’s always like that and we aren’t treating her for that”. Poor lamb had only wanted to help and was asking the question as to why my heart was racing whilst I was lying down still during an ECG, now we will never know as PoTs is only supposed to occur with changes of posture, I hadn’t moved for ages at the time the ECG was done.

Finally after what seemed like forever I was given IV Cyclizine. Within a few seconds of the injection being finished I really didn’t feel very well. I must've turned a funny colour too as Sharon told me I wasn’t looking very well. I suddenly felt very panicky and was worried that the nurse had just given me Iv Ondansetron. I just about managed to tell Sharon that my chest was tight and I felt woozy. Within seconds I was battling to remain conscious, my eyes were rolling in their sockets, unfortunately no one could see this as I had my large very dark glasses on as I become very light-sensitive when my head pain is bad. I felt myself falling as I slumped to the right hand side of the chair. For the briefest of moments I blacked out only coming around as Sharon was screaming my name and shaking my leg trying to rouse me. I couldn’t respond as I was still fighting to stay awake, I couldn’t focus on anything as my eyes just kept wanting to disappear into the back of my head.

Eventually the nurse realised something was wrong and whacked the bed back so that I was flat and then took my blood pressure. By the time she got her reading 109/73 I was feeling more or less with it again. She was trying to excuse herself for not noticing the fact I had passed out by telling Sharon and I it was because I was wearing makeup and sunglasses. I think the biggest clue was I wasn’t responding to Sharon and had slumped to one side. She did tell us that Cyclizine can crash your blood pressure which was obviously what it had just done. What she failed to tell me was that it would repeatedly crash my blood pressure for the remainder of my time in the unit. You’d think that she would have monitored me regularly after that episode but she only took my vitals once more and that was just before I left, nearly three hours after the faint.

I have faced some scary times when in hospital but that has to be one of the most frightening because I was shit scared the nurse had killed me by giving me IV Ondansetron and who can blame me with her laissez-faire attitude towards protocol.

I spent the rest of the infusion time trying very hard not to faint. Throughout the infusion despite the extra fluids going in, I kept feeling like I was going to pass out. I kept feeling like I was having an out-of-body experience. I knew if I fainted again there was a high probability of me not being allowed home, so I drank loads and kept being completely upright to an absolute minimum.

I only let Sharon know how bad I was feeling so that she could place herself in front of me should I try to face plant.

Despite how awful I felt I did have a good time during the infusion, it’s always great to catch up with Sharon, we always have something to say. Plus I got to catch up with a doctor who I thought I had lost forever to the acute stroke ward. He knew I had been to Bath the week before (it wasn’t a great appointment and all they will do for me is write a strongly worded letter to tell the hospital to get on with the blood patch as there is no increased medical risk) and we talked about the clinical trial that he wants me to be a part of. Its called a Sphenopalatine ganglion Block, it's basically a small catheter type device placed up your nose, which they then use to squirt a dose of local anesthetic up. It works on a group of nerves at the back of the nose and has good results in conditions like chronic migraines, trigeminal neuralgia and facial pain. This doctor and my neurologist want to trial it to see if it is effective for pain caused by a CSF Leak and I am more than happy to give it a go if it has a chance of stopping my pain completely.

I let this doctor know that last month’s occipital neuralgia nerve block injections had been ineffective. I told him although the nurse that does them maybe highly qualified she doesn’t do it the same way he does, which is multiple small injections along the occipital nerve. He agreed due to the fact the last lot hadn’t worked he would repeat them for me, if he came back from his meeting before I left the unit. Thankfully I was still there on his return and the injections he gave me have worked beautifully.

I have very little memory of the rest of Thursday, Friday and most of Saturday as my blood pressure wouldn’t settle and kept crashing after the cyclizine injection. I have had to piece the events together from Sharon and my husband. I don’t think I have ever been made so sick from a trip to hospital.

Due to the incident with the nurse ignoring my red wrist band and attempting to give me a medication I am allergic to, I have had to report the incident to the hospital. I have wrestled my conscience and I wouldn’t be able to live with myself if another patient ended up being given the wrong medication due to protocols not being adhered to. It could make things very difficult for me in the unit but I couldn’t live with the thought that  by not making a complaint it contributed to someone else coming to harm.

So last week’s Caffeine infusion was eventful to say the least.

I'm Fine

I’m fine seems to be the mantra I have adopted since becoming chronically sick with Ehlers Danlos Syndrome (EDS HT), Postural Orthostatic Tachycardia Syndrome (PoTs) and a Cerebrospinal Fluid Leak (CSF leak) which has occurred this year, to name just a few. It has become such an ingrained phrase in my vocabulary that I have uttered the words without thinking to a doctor after being blue lighted to hospital. I think it is some kind of self preservation mechanism as when you are chronically sick you soon realise that people really aren’t that interested in your latest symptoms. When asked you reply without thinking because you will do anything to move the conversation forward. In a complete contradiction to what many people seem to believe about those who are chronically sick, we don’t like the attention that our conditions bring, so by saying I’m fine we can stop the conversation in its tracks.

Being sick can turn you into a bit of a fib teller, who really wants to know that you have pissed yourself because your bladder decided to empty itself when you answered the front door? Maybe they’d like to know how my bowel stopped working for 48 hours and when I eventually went I blocked the toilet? R.I.P toilet brush, you put up a valiant fight, your efforts were not in vain. Being ill is not Hollywood glamorous, our bodies can quite frankly be disgusting in the symptoms they throw up (pun intended) so why would I want anyone but the closest people around me to know how I really am?

Many people I know with chronic conditions really downplay their symptoms even to other chronically sick friends. We are constantly aware that over sharing can cause not only disgust but the accusation of attention seeking. I am also aware that there are so many other people who are much sicker than I am, so I feel that I can’t speak up because it would make me look weak in front of my peers. So you end up in the ridiculous situation where no one is telling the truth about how bad things are until you hit rock bottom. And even then when destination rock bottom is reached, you fear the condemnation of others who don’t believe you or who simply disappear on you when you need them most.

In the last couple of years I have had to endure the experience of  disappearing friends when things have got tough. Being investigated for a possible tumour in your pituitary gland? Eat my dust. Got a confirmed CSF leak? I’m too busy to see you. Why would you put your head above the parapet and actually tell people that you aren’t fine when you are treated like that? So many of us have learnt the mantra of “I’m fine” that when things are truly awful, we can’t face telling people things are far from fine.

It has turned me into a bit of a liar where my health is concerned, there are very few people who know how I am on any given day and even then they will only get the edited highlights. However that can backfire as we are so focused on being fine that when we need to ask for help we can’t. I have a feeling of shame when I have to admit to myself or others that I can’t manage. A few months ago I asked my gp for a referral for an updated care plan in case of emergencies, if something happened to hubby as I couldn’t manage alone. His response was to give me a website to contact, when he had already been told that I couldn’t sit up and he was the one who diagnosed me with low pressure headaches aka a CSF Leak. My years of telling him that I’m fine spectacularly came back to haunt me.

This piece was inspired by a conversation with my good friend Sharon, who herself faces many health battles. I consider her condition to be worse than mine and she considers mine worse than hers. We are reasonably honest with each other but I also have a tendency to minimise my symptoms and I am sure she probably does the same with me. She is the person I am most honest with but I sometimes feel guilty for moaning to her when she has things so rough herself. She also freely admits how hard she finds it to ask for help, she like me is determined to be as independent as possible and not a burden to those around her. We laugh at how we both frequently say “I’m fine”.

Hubby usually gets an edited version of how I am if he is working as I don’t want him to have the stress of worrying about me whilst he is trying to earn a living. I have been known to put on a brave face until the minute he leaves the house and then crawl to bed, just because I know it will make him really anxious if I tell him the truth. When he is home from work I will also fight my symptoms for as long as possible down playing them so I don’t have to go to bed. A lot of times this year it’s not been possible as the head pain caused by the CSF leak only lessens when I lie completely flat.

I learnt quite early on in my chronic ill-health journey that when people ask how you are, they really want you to reply “I’m fine and you?”. They don’t want to know what is really going on. Society seems to have a real issue with those who are ill, just look at the obituaries and you will see phrases like “bravely borne”, “brave battle” and “courageous struggle”. Even when dying those who are sick are supposed to paint a smile on their face and not “give in” to their illness. To admit that things aren’t fine and dandy is to show weakness, allowing your condition to have the upper hand. In the chronically sick community people describe themselves as warriors or  zebra strong, I don’t have a problem with how people want to label themselves but I don’t feel very warrior like or zebra strong when my head has been down the toilet for a few hours due to my CSF Leak.

People who do not deal with illness on a daily basis can end up feeling lost or hopeless when confronted by those who have a chronic condition. I know looking back that before I got sick I had no understanding at all about the issues faced by those who were dealing with symptoms outside that of normal illness such as a cold or flu. We seem to struggle to fully understand unless we have walked a mile in someone's shoes. Now I am part of the community I am embarrassed by my previous ineptitude. It doesn’t stop my anger towards though who profess to care but negate what I am going through. I also don’t want your response when faced by my reality to be to give me unsolicited medical advice.

It is a difficult tightrope act that each community performs, for the sick it is do we trust this person enough to go beyond the usual I’m fine and for the other it’s having the honesty to admit that sometimes you don’t want to know all the gory details, without making the other person feel guilty. It doesn’t help that during a consultation with a long gone doctor I was told I had provided him with too much information or that on another occasion I was told I spent too much time on the internet looking up syndromes to have. If those that are treating us can’t provide empathy and understanding, is it any wonder that we resort to lying, even to those who are supposed to be treating us? If they aren’t listening then what’s the point in saying anything other than I’m fine?

The other side of the coin is that there are so many things wrong, if someone were to ask me how I really am, how much do I tell them before their eyes glaze over? Let’s take today as an example, I have a rapidly amplifying headache from my CSF Leak which means if I don’t get more caffeine in me or have a lie down it will go from annoying to excruciating. I have TMJ (Temporomandibular joint pain) caused from my trip to the dentist on 16th November where I had to have my jaw open for 30 mins and was moved around (not roughly) by the dentist. This means that all my teeth hurt, my jaw hurts and closing my mouth hurts. So I am on a diet of soup and soft food to help it settle down quickly. I am unable to maintain my body temperature so I have an excessive amount of layers on in an attempt to keep warm. My fingers are swollen and stiff, so typing has been a joy. Various joints around my body are emitting low-level pain signals. By low-level I mean less than a 6 out of 10 on the pain scale. Are you bored yet?

When I say I am fine what I mean is I am my normal level of shitty health. If I admit to you that I am in pain, it’s probably creeping towards a 7 or 8 out 10. If I tell you that I am really bad / awful then I am probably deliberating about whether or not to get outside medical assistance or if I need to get hubby home from work. What I am fine doesn’t mean is I am ok, I am symptom free, it’s as if I have never been sick because those days just don’t happen.

I’m fine means I can cope with what is being thrown at me without resorting to extra pain meds or going to bed. However what may have been I’m fine an hour ago could be it’s not good an hour later. My body has a tendency to misbehave, move in the wrong way I could end up in severe pain from a trapped nerve in my back or muscle spasms that have me walking like a great ape. PoTs symptoms can strike at any moment with chest pain and palpitations. My blood pressure could plummet causing me to faint or feel the urge to sleep. I just don’t know what is going to happen when and everyday is spent like this.

Obviously for those of you who read my blog on a regular basis, you know that I am anything but fine. You know I should be winning awards for my ability not to look sick or portray how sick I really am whilst out in public. So I continue to play the “I’m fine” game and the only person I am hurting is myself.