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Thursday, 24 November 2011

Reason to Smile- Help Is Out There

The whole impetus behind starting this blog and the 'charity in the making'- (the aims of which are to establish an infrastructure of emotional support for those who become disabled, whilst also providing support for their partners and parents who often become unwitting carers)- is the fact that I feel that I have personally received inadequate emotional support since becoming disabled.
My desire is that everyone should have the opportunity to receive psychological support- particularly in times of great change and disappoint; such as when one becomes disabled and has to say goodbye to dreams and expectations that they may have had, that are likely now to never be realised.
As a Reason to Smile post tonight, I am attaching a link to The Samaritans, who not only provide the support service at the end of a telephone, but have also moved with the times and now provide an email service if you'd rather not vocalise your issues and would prefer that physical and emotional barrier of typing an email.                                             http://www.samaritans.org/talk_to_someone/email.aspx      
The organisation SANE, ( who I have featured before in a Reason to Smile a few weeks ago-http://www.discoverdisability.com/2011/11/reason-to-smile-black-dog-campaign.html ), also provide an emotional support forum- the ethos of which is to provide mutual support based on responsibility, respect, empathy and acceptance.   http://www.sane.org.uk/what_we_do/support/supportforum/

These groups are making me smile today as it is wonderful to know that there is support of some form out there for everyone should they need it.
Everyone is different and people benefit from different forms of support. I personally prefer a face-to-face approach to emotional help- but at a time when I was not physically able to seek such physical support, (being that it was not being offered to me- as I am hoping it will eventually be through my charity's work)-  I now feel that had someone suggested these online services to me during this period of adjustment, I would've been helped to some degree, at a time when I was at a desperately low ebb emotionally

I feel it is imperative that we break down this ridiculous stigma associated with depression and mental illness in general.
There is so much emphasis in this country on being the best that we can possibly be and overcoming one's issues with great british stoic strength and decorum.
To some degree this is all very well, as in some people I beleive that this school of thought may induce an impressive strength to achieve: but the fact is, we all work SO differently and it is VITAL that emphasis must also be put on realisticly accepting one's limitations, ( be them physical or emotional),  and on encouraging people to support others when they are going through difficult hurdles in their lives for whatever reason- or indeed for no reason, as they are simply struggling to cope.
We should learn as a country to support, rather than to scrutinise and scathe.
Let's break down the barriers of this stigma of depression- or emotional weakness, as it is all too often dreadfully described!
I have personally really battled with depression and anxiety since becoming disabled. I am not ashamed, as I feel that elements of society subconsciously encourage me to be.
I am proud that I am dealing with the challenges life has thrown at me and I openly admit that even now, I regularly fall apart and end up with those endless cascades of tears flowing down my face, curled up upon my bed, and using my Barley dog as an over sized, four-legged hankerchief- all for no reason more than life is tough and I need to let out that pent up emotion.
Sharing some of our innermost concerns and problems, I believe can help both on a personal level and a social level.
I am smiling today knowing that there is support out there for me personally and for others!
Never be ashamed to ask for help or admit that you are struggling with life.
I believe there is more strength in asking for help than in living in denial and stubbornly struggling on in pain and difficulty.
Help yourself and help others.
Goodnight everyone. Sleep well.

Wednesday, 23 November 2011

Not Until December!

The last few evenings, I've been served a fair amount of stick from my husband, brother and sister-in-law, for commencing and immersing myself in my Christmas present buying, wrapping and list making.
Besides the fact that I am the biggest fan of Christmas, (much to the annoyance of my scrooge of a husband), there is more to my being a little premature with my festivities, than simply my love for all things yuletide!
The fact is that I have learned over the last few years, that any strenuous physical activity, ( and by strenuous for me, I mean sitting upright in my wheelchair for longer than an hour or two), will invariably result in me being confined to my house, or worse still my bed ,for hours, days, and even weeks as a result- thus eating into time that 'normal' people may anticipate doing a little last minute Christmas shopping, attending Christmas drinks and basically conforming to the obligatory running around like festive headless chickens, ( which surely at this time of year should more aptly be referred to as headless turkeys)!
The festive season being the whirlwind of social activity and commercially induced expectations that it has so become over the years, means that I will almost certainly attend a social or familial outing/gathering and end up enjoying myself a little too much and consequently staying that crucial and fatal hour too long and consequently render myself confined to my bed for a period of time that may then prevent me from attending other festive frolicks.
Life with a disability and chronic pain in particular, makes running and keeping a social calendar extremely difficult, as you never know when pain will prevent you from doing things. Therefore, my quest to be organised and have important presents bought and wrapped and under the consol table, ( the nearest fit until there is a tree to put them under!), is in the hope that I can restrict the amount of times that I have to take a rain check/ bail out / or give my apologies for having to let down my friends and family in whatever activity we had planned as I will have hopefully paced myself adequately by starting Christmas preparations in mid-November..
Whichever of the above phrases you want to use- they all mean the same thing- that I am disappointed that I can not attend the event in question, as well as being devastated that I am living in a perpetual cycle of letting those around me down!
With my therapist/shrink/ counsellor lady, I am currently working on the art of pacing, in the hope that I will find that equilibrium of living, that will enable me to get the most from life, in order that I can give the most back.
Each time I let down my Mum, best friend, God daughter, brother, cousin, old colleague or aunt- it always feels like there's a knot tightening in my stomach.  I HATE letting people down.
People are wonderful creatures and they have an amazing capacity for empathy and understanding, but I have been hurt incredibly once before by an extremely close friend of mine, who at one of my most poorly times, when I was attached to my bed by catheters, nebuliser tubes and a month old spinal surgery scar- stated  that she felt our friendship was-  '..a little one sided', at that point in time.
The sad thing was that at the time, all of my relationships were one sided.
I couldn't go and see people- as I was imprisoned in my bed;
I couldn't talk to people- as I was suffering with pneumonia and could barely breathe,
and I could barely confer or interact in any way with those at my bedside- as my morphine levels were crippling any cognitive function.
My marriage, family relations and friendships were all one sided at the time as that was all I could give and the last few years have seen at times only a little improvement on the described scene at my bedside.
Ever since this one simple sentence scarred itself upon my heart, I have feared a repeat episode of it from another friend every time that I have had to cancel an appointment with friends or family.
It is most certainly not that I doubt the love of my loved ones, it is more that I understand that we are all merely human- humans that all have lives and issues of their own.
My illness and disability is exactly that- it is mine and not for others to be hurt by, if there is any way at all I can help it! 
My disability is not the primary factor in everyone else's life- that would be weird; to them, it just naturally becomes the thing that irritatingly keeps affecting their social schedules.
I hope that those closest to me who have lived through my becoming disabled with me, will now know that when there is any possible way that I can be somewhere- I will be; however the nature of the beast of chronic pain means that this is all too often not possible. I pray that people can understand this the best that they can.
I am wrapping presents and writing cards this evening, in the hope that I don't have to be that person only capable of giving a one sided relationship this Christmas.
I want to give my loved ones a Christmas period they deserve- one where I sustain my health long and well enough to give them a card and/or a present.
I want to give them a festive period free of periods of immense neurological pain where I am completely stuck to my bed or sofa, incapable of joining in any 'reindeer games', (or more accurately Articulate or Monopoly in our household!), due to the incredible amount of morphine that I have to take just to make those minutes bearable.
I want to pace myself through this marathon of a social season, without having to send too many fateful texts or phone calls to say that once again I will be letting that friend down.
Therefore- I will continue to start Christmas in November in the hope that I will at least be capable of the above to some degree.
Pacing is not easy. I'm failing at pacing right now- my therapist/shrink/counsellor lady told me to scheduler two hours maximum for writing my blog- easier said than done when you are battling immense pain, a cold and sleep deprivation, coupled with being a perfectionist- something that I only realised since starting these sessions in fact!
I'm starting Christmas now, in the hope that I will give my best, (but not too much), into being there for my loved ones over the festive period.
On that note, having exceeded my allotted writing time and consciously leaving the spelling and grammatical errors I know are present in this post, (apologies)- it's off to bed for moi!
Until tomorrow everyone.

Tuesday, 22 November 2011

A Quick Quote

Evening everyone. I'm wrestling with my dark feelings tonight over the fact that my disturbed sleep and morphine intake have meant that I did not wake up today until 4.30pm after finally falling asleep at ten this morning- and have thus wasted Tuesday 22nd November 2011; a day I will never get back or have the opportunity of doing over again.
Ironically my Reason to Smile this evening was to be a couple of quotes that usually keep my spirit high.

"This is the beginning of a new day. You have been given this day to use as you will. You can waste it or use it for good. What you do today is important because you are exchanging a day of your life for it. When tomorrow comes, this day will be gone forever; in its place is something that you have left behind...let it be something good." 
Author Unknown
 
Despite this quote making me feel a little frustrated with myself and my situation on days such as this one, this is nonetheless a quote that I personally hold close to my heart, along with the following by Ghandi.

 "You must be the change you want to see in the world."

Feeling like I may be coming down with something on top of everything else at the moment, I'm afraid I will be keeping it short and sweet this evening, so that I may promptly return to my snuggling on my sofa with dog, blankets and my childhood toy Gismo, who always makes an appearance when I am feeling poorly and sorry for myself, so that I may smother his head in Olbas Oil and Vicks Vapour Rub and reap the benefits from cuddling him- I'm one step away from doing the same with Barley!

I'm keen to share more positive thoughts on difficult days such as this and I would love to know which quotes you kind encouraging- please share them on our Twitter or Facebook pages.

https://twitter.com/#!/DDisability      https://www.facebook.com/#!/profile.php?id=100002588247268

Monday, 21 November 2011

Drained By Pain

Apologies in advance- no post is going to be particularly eloquent or perhaps even readable when one commences composition of it at 1.46am!
Although the 20 minutes immediately prior to typing this post were dictated by my laptop's deep desire to keep crashing on me; I'm afraid the hour or so before that was spent wrestling with my feelings of anxiety that have once again bubbled to the surface of my consciousness.
Those of you familiar with my blog ramblings, will be aware that I am currently seeing a counsellor/therapist/psychologist/shrink. After five years of fighting for psychological assistance of any kind to help me deal with my change in circumstances, I am extremely grateful to finally be receiving some help at all and particularly thankful to be receiving it at a time when I feel it will be extremely beneficial.
Not only am I about to commence my no doubt arduous journey into potential parenthood, (should my specialists deem it possible of course), but like every one of you reading this I'm sure, I am also experiencing the everyday anxieties and stresses associated with having a normal life, family, marriage and friendships.
Life is stressful and life is tough on all of us at times and often in very different ways- and it can all too often be that the smallest things can trigger off tears or tantrums in even the best and strongest of us!
Always a sensitive soul, both post and pre accident, I have noticed how much more difficult dealing with emotional issues can be when you are already in immense unrelenting and frustrating chronic neurological pain.
Pain eats away at your nerves both physically and emotionally. Pain really does wear you down and can at times make you want to shut out the world completely.
The only way I can best describe this to someone who has not had the misfortune to experience such things, is to imagine a debilitating migraine and raging toothache combined and to think of how even a single one of these factors can naturally make many of us niggly with those around us, let alone the both combined!
Despite my best efforts to articulate an adequate description of how pain can effect one's emotions- as expected, after an hour's fretting and crying, a pretty hefty morphine dose and a current time of 2.21am- I feel that on reading this back, I have failed pretty miserably I'm afraid.
Hideous chronic pain makes life that bit tougher. Hideous chronic pain all too often prevents you from getting more than an hour or two's undisturbed sleep and requires you to take morphine and other opiates that also make you tired beyond belief- throw in life's daily trials and sometimes it can all just feel that bit too hard.
To many reading this post, I will perhaps come across a little weak or self indulgent tonight, but this blog is all about enlightening those people who haven't experienced difficulties such as a disability or chronic pain in particular, about what those people who do experience them have to go through and why they may at times be a little distant or even short without intending to be. Sometimes the pain literally controls them.
This blog is also here to show those who have lived, or are living through such difficulties, that there are more of us out there- as for me that has been the greatest thing I have gained from writing this blog- hearing from others in a similar position to myself.
On that note, it is 2.40am and my bed is well overdue!
Until tomorrow everyone. Sleep tight.