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Friday, 9 September 2011

Disappointing Day

Today I had an appointment with a new neurosurgeon in my usual neurology department, at the hospital that I am unfortunately becomming quite a regular at.
This appointment was made for me by my neurologist, in the hope that this surgeon may be able to offer a suggestion as to the next path of action for managing my condition.
Today’s appointment was short. I am extremely reluctant to have further surgery at present and as the neurosurgeon is only able to offer surgery as a treatment- the consultation was a naturally a brief and pretty pointless one.
Despondent and extremely disappointment, I wheeled myself into the neurology outpatients waiting room, as the sting of salty tears welled up to the point of bursting point behind my eyes, the pressure mounting and mounting until the first trickle of warm liquid escaped and tickled my face. I wiped the tears away discretely as I wondered just where this intense emotion had emerged from?
Deep down, I should have known that this wouldn’t have been the most fruitful of consultations: yet despite my vast experience of being poorly and hospital dependant, I still naively trusted in 'the system', that all I needed to do was sit back and ride the ‘treatment train’ and rely on the fact that everybody caring for me would always know my full case history and that each appointment would be with someone who is fully informed of my complicated condition.
I am most certainly not proportioning blame or critism tonight, I only mean to highlight the fact that perhaps we as patients have to keep abreast of all of the treatment areas pertaining to our own conditions; as unfortunately our predominantly wonderful NHS staff are so overstretched that they often get such little time for consultations. Our GPs have to work such long hours and have so many patients to contend with, that we can hardly expect them to know every patient’s case inside out and back to front and not forget a single detail, particularly when they are as complex and comlicated as mine!
Today’s consultant was great and very helpful indeed and I feel it important to stress that I thankfully simply can not fault my GP either. My problem is not the people who are treating me, but the fact that I have so many people treating me.
Spinal Surgeons, Neuro Surgeons, Orthopaedic Consultants, Physiotherapists, Hydro therapists, Occupational Therapists, GPs, Pain Consultants, Pain Psychologists, Mental Health Teams, Urology Consultants, and Neuro Urologists; I’ve had varying combinations of all of the above treating me throughout the last five years. That is an awful lot of areas for one consultant to be fully briefed in, so I appreciate why so often they are not and how crucial areas of my condition are sometimes overlooked.
Fighting back the tears as Garry and I meandered our way through the maze of corridors back to the hospital exit, I felt a hundred eyes upon me as there was no stopping the tears from rolling down my cheeks by this time.
Wonderfully supportive as ever, my wonderful husband clutched my hand tightly all the way back to our van where he then held me close and stroked my hair and made me feel safe and secure and that there was nobody else in the world but us.
Why was I so upset? I have certainly had worse news than- ‘unless you want further surgery, I am yet another consultant who is unable to help you’, that’s for sure!
I believe that the thing that upset me today was that I had let my guard down and let myself have hope and complete faith in the fact that the consultant that another consultant has said would be able to help me, would be able to do just that. He couldn’t and my faith was unfounded.
I feel that today the emotion leak happened, as lately I have been feeling quite insecure about so many areas of my life. For starters, with a foreign holiday fast approaching, I am extremely upset about not being able to do anything about my weight, (which is a huge three to four dress sizes bigger than my slim Virgin Atlantic 'Trolley Dolly' days of size 6- 8!
My medication which they simply can not reduce or find an alternative for at present, makes me put on weight, as well as making it really hard to lose weight. I also obviously posess a body which is completely incapable of exercising, so dropping any pounds is consequently nigh on impossible and insanely frustratingly!
I have also recently been feeling immense frustrations that even though I am enjoying writing and establishing my charity- I still have to rely on my husband for financial means.
When I add all of these things together, (along with many others factors that would take the whole night to cover fully!), I realise that I have such very little control over my own life!
This point was only emphasised today, by this consultation demonstrating that I crucially have lack of control over my treatment also!
Today I was told that it was really quite ridiculous to be under another spinal surgeon here in London, when the surgeon who performed my operation, (although in a different NHS trust), would clearly know what is going on inside me much better than anyone else.
I REALLY appreciated today’s consultant’s frank and honest appraisal of the situation, however I couldn’t help expressing to the poor guy, ( who was the first person in ages to listen bless him!), that this is something that I felt was logical and sensible a year ago- only to be told that this was not the case and that I should trust in them!
A year trusting them and not my instincts and experience has cost me a year of my life- a year which is a pretty significant loss in time, when at 28, we still have many hoops to jump through and consultants to see, before we can even begin to find out whether physically having children is even an option for us with my condition. I panic that with that, time is not on my side.
I’m cross, upset and disappointed in myself that I didn’t have the faith in myself, to speak up and not follow blindly as consultant after consultant would contradict one another and still I would not vocalise the contradictions that they were making with one another.
If I have come away from today with anything, it is that we certainly should have more faith in that which we have learnt along our difficult paths and to not always blindly follow the sentiments of people who may have medical knowledge and training, but unfortunately do not have the time to know you and your extensive history inside out as well as you- we are our own experts!
This is obviously not to say that we know best and that we should ignore the advice of the real experts; but it is to say that maybe we are unfortunately the only ones who have all of the bits of the puzzle of our treatment and we should not be afraid to voice concerns or opinions that we may have.
I’m afraid to say that in chatting to others, it seems that there is a strong consensus that many of us feel intimidated by consultants, registrars etc. not to do just that and speak up- but this is a whole other post entirely!
Well, that’s what I’ve learned from today. I hope that your day has been a good one.
After an emotionally draining time, the thing that has made me smile today is simply sitting snuggling in front of the tele with my boys!
When the chips our down, my husband and Barley dog are ALWAYS there for me and words just can not express how grateful I am for these blessings!
I pray that you have as strong a support system as I.
If I am well enough in the morning, ‘my support system and I’, are off to support our friend in a charity event that he is hosting and I don’t believe that I will have any internet access.
In case that this is so; I wish you a wonderful weekend.
Goodnight everyone.

Thursday, 8 September 2011

Reason to Smile- Wonderful Wight on Wheels

Hi guys- just a quick one again tonight I'm afraid, as I'm still feeling a little under the weather.
A friend of mine drew my attention to this wonderful story, of a directory of accessible venues in my 'home town' of the The Isle of Wight.
This has to be a wonderful thing and I look forward to looking into it and commenting a little more at a later date.
In the meantime, if you live on The Island, or visit there at all, or even feel inspired to create a directory for your home town- please, please take a look.
Good night everyone. Sleep well, sorry for the brief post.

Wednesday, 7 September 2011

Reason to Smile- Iron Strength of Body; Iron Strength of Spirit

Evening folks. I hope that you have had a happy and healthy day today. Unfortunately I am feeling pretty poorly this evening, on top of having excruciating pain in my legs- so much like last night's, I'm afraid that tonight's post will simply be a link to another inspirational tale of human strength.
Married to an Ironman in both physical and emotional strength myself, I am well aware of just what an Ironman triathlon competition entails and just what dedication  and emotional strength is needed to even commit to taking part in one!
The Ironman Triathlon consists of a  2.4 mile swim, a 112 mile cycle and is all topped of with a marathon run of 26 miles and takes between 8 and 16 hours to complete in competition conditions- it is most certainly not for the faint hearted and by no means an easy indertaking!
Garry signed up for his first Ironman competition six months into my treatment for my spinal injuries, as a distraction from the difficult and serious conversations that were being had at home about my treatment- (and I'm sure the fact that the competition was to take place in Australia and we would need a three week holiday in the Oz sun in order to compete didn't help too much either!).
Four and a half years down the line and Garry has now competed in three Ironman competitions and numerous marathons and triathlons.
Attending two out the three of these competitions as a supporter, (Garry actually proposed to me at the UK Ironman event), I always found it astonishing to see just how much people would choose to put their body through in the name of 'fun'!
In my able bodied life I had always LOVED running and competing in athletics events, but as I did so mainly as a sprint distance competitor, seeing these people push their bodies to the limits for over twelve hours solid was just astonishing to me!
Imagine my shock then, when I found this story this evening, about this incredible man who took part in such a competition a mere six and a half months after having major heart surgery!
This man's amazing strength of spirit, above physical strength, is what I find fascinating in this story; but I am extremely keen to stress that this situation is unique to this man and we must not compare stories, but instead be inspired to do all that we can do with our own circumstances and instead draw encouragement from the fact that others have overcome that which may have seemed impossible to them.
Well, my pain is dragging me off to my bed imminently so I must say goodnight.
Good luck overcoming your own battles and challenges that Thursday 8th September may bring.
Sleep well everyone. x

Tuesday, 6 September 2011

Reason to Smile- Tuesday 6th September

Hello everyone, I hope that you are as well as you can possibly be. I was sent a link to this article today which has completely blewn me away; I will be amazed if it doesn't do the same to you! Enjoy...


Sunday, 4 September 2011

The Emotional Pain of Physical Pain

Hello everyone. I hope that you have all enjoyed a wonderful weekend.
Mine has been one filled with the company of fabulous friends and family for whom I am so thankful for.
My loved ones are certainly the thing that is making me smile today and for that matter, they are the things/people that keep me smiling throughout all of my days- particularly the ones filled with pain and despair.
I am always conscious when writing about the joys of my amazing support network, that I am incredibly lucky to have such family and that this area is one in my life which I have been incredibly blessed!
For those of you who are not quite as fortunate in this department as I, I want to assure you that things are not always blissfully rosy and sickeningly perfect all of the time; as I can honestly and shamefully admit to you tonight, that it is these wonderful people who care the most for me and for whom I in turn care for more than anyone in the world, that I sadly take out the most of my frustrations and pain and upset upon.
My relationship with these family members is and has always been an extremely close and loving one and I would love to one day be able to repay all of the help, support and patience that these wonderful individuals have given me
Despite our wonderful and joyful times together, these people are also the only people who have been and continue to be present when I am at my lowest and most desperate points in my life- when the pain completely consumes me and prevents me from even being able to construct a sentence to communicate to my wonderful family.
My mum, dad, brother and husband are the ones there for me trying desperately to help in anyway that they can when I am so low from being confined to my bed with maddening pain, that at times it has made me inflict pain upon myself and want nothing more than the unthinkable to happen, if it were to mean that my pain would in anyway subside.
When feeling these awful thoughts, I understand that it is my selfless family who try their best to be there for me; yet when feeling these desperate thoughts, it is my only natural reaction when consumed with the morphine induced lack of concentration, to rebut interaction with the outside world in anyway whatsoever as it is just simply too hard.
I love my parents and sibling and husband more than anything or anyone in the world, yet I continually hurt them with my words when in agony and that is probably one of the hardest factors of how my life has been affected by the onset of my disability of chronic pain and reduced mobility, that I have had to stomach. After my pain and morphine side effects subside, there invariably follows a teary hug or telephone conversation with my mother that will never in my head make up in any way for my frustrated behaviour, even when she tells me that she understands completely, as she could not comprehend how she would react and behave if she were to be subjected to the levels of pain and discomfort that she has had to witness me be so.
I feel a lot of trepidation in posting today’s blog that a lot of you whom have never had to deal with the feelings of insanity and impatience that come with having to live with unrelenting pain, will make harsh judgements upon me; but I do so in the hope that those of you out there who have such challenging lives, will feel a sense of relief that this rarely spoken of subject is finally being portrayed
I have so much sadness in my life that my actions cause pain to those whom I love so dearly and each night as a Christian I pray that I will be blessed with the patience to deal with my circumstances in a better way when they reach the levels spoken of here.
To those voicing such angst and also to those on the receiving end of these outbursts, I dearly hope that in speaking more openly, we can all try and understand one another and each other’s circumstances in a better way.
I am most certainly not making excuses for my actions, I am meerly once again asking you not to judge my actions until you have walked a mile in my shoes or in my wheelchair whilst most importantly trying to help those who have had the good fortune of not having such bad fortune, to hopefully have a better understanding and subsequent empathy of the emotional torture and upheaval that goes hand in hand with living with pain or disability.
Life is so short. Let’s try and understand one another and consequently help each other with the trials in our lives that unfortunately we all posses in varying ways and in varying degrees.
I wish you a well and wonderful week. Take care of yourselves and one another.
My blessings