There is no thrill in taking the pill

•December 4, 2012 • Leave a Comment

Don’t be put off by the title, it’s just my way of highlight the issue many people face when living with a chronic health condition. To be completely rank, most people in such a situation detest having to depend on prescribed drugs in order to just get through the day. I know that I certainly do. I appreciate that this isn’t necessarily a shared opinion, but it is one that I have a serious personal issue with.
Taking medication isn’t as clear cut as it was a few decades ago; many people today take a combination of prescribed drugs, multiple prescription drug, over-the-counter medication, and herbal supplements. Due to the advancement in medical science and practice, various drug management patterns are emerging significantly; Clinical /medical prescription, Self-prescription, Addiction and Substance abuse are such examples. Managing medications is becoming more complex. The boundaries between taking approved drugs for medical usage, and using recreational drugs to treat a chronic health condition, or when and how these are taken should be taken have become blurred leading to confusion, mismanagement and eventually abuse or even addiction. This has been cited by some as the cause of well-known celebrity deaths such as Michael Jackson and Heath Ledger
The array of medical drugs, herbal supplements and patients’ regimes can be over-whelming not only for the physician but also for the patient. In my case I take an ‘assortment’ of medical drugs and herbal supplements such as;
pain-killers,
steroids,
NSAIDS (Non Steriodal Anti-Inflamatory Drugs),
disease modifying drugs,
vitamin supplements,
herbal supplements
You see, I wasn’t kidding when I said assortment. When I gaze at my medications in my little medicine cup before swallowing them, I marvel with humour because of all the different shapes and colours of the tablets. Actually this makes the thought of swallowing them bearable. How I wish this WAS the case. Quite frankly most medicines taste hideously bitter and chalky. Some tastes linger in my mouth. The smell of all my medication usually causes me to heave and vomit, just the thought of swallowing them can make me naseous. Refreshing my mouth after I have taken my medication with some juice or with a good mint sweet does the trick, thankfully.
I take my tablets with a protein drink each morning. Taking my medicine has neatly fitted into my daily morning routine for instance – wake up-bush teeth-take medication with my protein shake-shower – get dressed – take my herbal supplements and vitamins…………
I never take these on an empty stomach. It is always advisable to line the stomach gut to prevent the development of ulcers. When I was a lot younger, I would avoid breakfast like the plague. This act of immaturity eventually consequently led to the onset of stomach ulcers. These stomach ulcers were terrible. I can recall always feeling nauseous, at times vomiting. I would have sharp stabbing type pain and would lose my appetite completely. I lost a lot of weight to the extent that people would make comments. The moment that I began to take Lansprazole (a drug that suppresses acid secretion in the stomach) prescribed by my rheumatologist, I could eat meals as normal and gained weight.
Unfortunately there are so many negative side effects to medication and for those who depend on such drugs to manage their health condition the probability of this group of people of which I belong often feel and experience the harsh , cruel and destructive effects of drug dependency.
I don’t particularly like being so dependent on my medication. What concerns me is the damage caused to my bodily internal organs and cells. I don’t like the feeling I experience when I miss out a tablet such as steroid tablet. For example when I miss out a steroid tablet it is usually my body that give me signs suggesting something is wrong. I get chronic back pain, after a few hours my joints gradually begin to cease up rendering me completely stiff and unable to move any joint whatsoever. When this process begins and I realise that I have missed out a steroid tablet, taking one usually alleviates the stiffness slowly. It takes a couple of days before my joints ‘recover’ and I am able to move them again. Being critically dependent on medication in this way can be emotionally overwhelming. I have made several attempts to cut down or stop taking my medications altogether. This has at times proved unsuccessful resulting in more pain and inflammation of my joints. I never stop any medication at once but do so gradually, by reducing the dosage over a lengthy period.
When I have been able to stop a medicine completely following this process I will do it having sought approval my rheumatologist. I also replace that medication either with another drug that has fewer side effects or increase my intake of vitamins and nutrients. I realise there particular benefits to taking medication. Some medications are a necessity especially if they enable you to have a prolonged life. The entire process, the emotional psychological physiological effects, the pros and cons all form part of the journey you face when living with a chronic medical health condition, which cannot be avoided.
In the second part of this blog post I will relay to you just how damaging my medication has been for me. What has been your experience?

The Ugly Truth

•August 28, 2012 • 1 Comment

 

I want to raise the issue of living with a debilitating health condition. I began to reflect on the issue when I read about the case of Tony Nicklinson.

Mr Nicklinson had a condition known as Locked -In Syndrome. He was diagnosed with this condition after suffering a stroke in 2005. He had wanted to end his life. His case raised the issue of assisted suicide. His condition rendered him unable to fulfil the act without the assistance of another person. He had wanted to end his life with the assistance of doctors and had taken his case to a High Court requesting that doctors be allowed to end his life without fear or prosecution. Mr Nicklinson sadly passed away only a few says following the Court decision not to grant his wish to die on his own terms.

On hearing of Mr Nicklinson’s story, I wondered why he had wanted his life to end. I recall reading in a newspaper that He had found his life unbearable and demeaning. Locked-In Syndrome can render a patient unable to move or communicate verbally due to complete paralysis of all of their voluntary muscles in his body except the eyes, whilst being completely awake and aware of their surroundings. Some of you will already be familiar with this case, but I want to examine the personal and social complexities of living with a profoundly debilitating health condition in light of Mr Nicklinson’s story.

Like many others, Mr Nicklinson before his stroke, was a very active person and lived an active lifestyle. When tragic circumstances occur that completely turns your life upside down such as the case above,  is it ‘natural’ to develop thoughts of ending ‘it’ all to end. In the case above, ‘it’ refers to ‘life’. For others living with a debilitating health condition, it may be the chronic pain suffered or the torment of living with a condition that renders you incapable. Like Mr Nicklinson, some people with ill-health or living with a disability do find life demeaning and unbearable. The inability to undertake basic bodily functions independently, the lack of privacy, and complete dependence on another human being can conjures feelings of losing one’s dignity and self-respect. I often hear people complain how their life is not comparable to any real form of living a life.  

I know from my own situation, I long for the illness and pain to cease. I get annoyed at the progressive nature of my condition and how it has stripped me from pursuing the plans that I had made for my future. I want my life to return back to how it was prior to 2008. I do not have Locked-In syndrome. I can move my body but my condition being Rheumatoid Arthritis has significantly reduced my ability to lead a normal day to day existence. I am limited by pain, stiffness and deformity. My RA is an auto-immune and debilitating disease which makes me prone to infection.  I am constantly faced with the threat of my health deteriorating. These health changes has affected my life and I admit that although my friends and family describe me as being brave and strong, I  have found life extremely challenging particularly as I am or was quite active and sociable. At times, I sit and gaze, reminiscing, reflecting on all the things I once did, and may never do again.

I have empathy for Mr Nicklinson and may others in similar situation. Living with a life threatening or chronic debilitating health condition is not an easy situation to cope with no matter how much people try to help you deal with the emotional trauma of it all. The simple fact remains that your life and in some cases your body is no longer your own to control. Being dependent on medication, on family or carers, your time and schedules are dictated by the endless medical appointments and treatment. You find yourself spending most of your days in hospitals and medical centres.

Not being able to live your life in the way that you choose, not being able to move your body or losing your independence can naturally lead to feelings of depression. A nurse once told me how the trauma of emotions felt is similar to that of grieving.  The sorrow, heart-ache, despair, loneliness, feeling bereft of hope and even fear of an unknown future are common and completely understandable in cases where fit and healthy people suddenly lose their health and independence.

How does one cope with being completely dependent on someone else for all of their basic functions, of being unable to work and earn a living, having little or no source of income?  

I don’t want my life to be like this forever, but somehow we all have to accept that life often leads us on paths that we would never have considered for ourselves, but how does one move on? It is important to face up to one’s own situation. We often find ourselves adjusting and discovering a new lifestyle that eventually becomes our ‘normal’. We re-invent our perception of what normal is or must be. We need to do this in order to cope particularly when faced with irreversible life changes. Some people adjust by getting busy enjoying alternative forms of fun activities such as engaging in exercise or a sport; others find more accommodating forms of work or turn to religion for comfort and focus. These examples are more positive adjustments. The trick is to keep your mind free and distracted from the monotony of living with a condition that impairs the lifestyle you are accustomed to.

Health, disability, illness, is uncompromising. Well, that is what I have learnt over the years in my futile attempts to live as much of the life that I once lived. Trust me when I say that I’ve tried. It didn’t work. I found myself struggling and creating unnecessary obstacles.  In my deliberate defiance not to succumb to the changes, I in fact exacerbated my condition at times. The pressure that I inflicted on myself to keep up with my peers at work for instance was stressful and tiring. The consequences of these on my body were even worse. I would have swollen joints, experience severe stiffness, more acute joint pain and depression.

Illness or disability isn’t a punishment or a curse; it is just what it is. Some people pay others for special prayers in their desperate but well-meaning attempt to be free from what they consider to be their ill-fallen fate. How people respond to a trauma like illness or disability is very much dependent on the extent of their desire to regain some degree of normality.

Accessible Tourism Part 2

•July 11, 2012 • 7 Comments

What it all means to me

My family decided we would celebrate my mother’s 70th birthday in Ghana. You see, the occasion was so important. How could I not travel with them? And how on earth was I going to cope with my disability!
Who was to know that the trip, travelling abroad to Ghana as a wheelchair user was to be a huge turning point for me!
We travelled in August 2011. This was my ‘awakening’. I’m not being over dramatic in referring to this experience in this way. Don’t misunderstand me, there were many negative challenges that I faced but the fact that I was able to deal with these and overcome them just proves that in the face of adversity, one can overcome anything.
Ghana is a place I was familiar with but I was unsure of how I and my disability would be received by my friends and family in my motherland.
I was concerned by accessibility and comfort and ultimately I wanted a good holiday so that I could share my mum’s birthday celebrations properly.
Negative thought began to weigh on my mind such as how will I cope with my luggage at the airport? How would I transfer to my seat on the plane? Will I be stuck indoors in the family home in Ghana due to inaccessibility, etc.?
The truth is there is always a way to deal with any problem.
Throughout my life I have observed that facing adversity is unfortunately a natural process in people’s lives and that victory over adversity is won with perseverance.
What dispelled my anxiety in the early stages of the trip was my experience at Heathrow Airport and the friendly services of the staff at British Airways. Once they understood my needs, they were very accommodating and efficient enabling me to have a relaxed and comfortable flight.
Some of the assistance I received was being able to make an early seat reservation on the plane, free luggage transportation within the airport grounds and help with transferring to the aircraft. In addition, I was escorted from the vehicle drop off point all the way to my seat on the plane and the cabin crew were extremely helpful.
Upon my arrival, the transition from the plane at Kotoka airport in Accra, Ghana was also very smooth due to the portable hydraulic lift that I was very fortunate enough to be able to use.
However I still had obstacles to overcome as just when I thought I could cope, the glee of satisfaction arising from such a smooth transition from the UK to Africa was short lived as often is the case for someone who has physical deformities or has a chronic condition that is so apparently obvious.
Thinking back now I could have crumbled from all of the stares and negative glances that I received but I realise now that what I perceived as a negative reaction to me in Ghana was actually a reflection of my own insecurities about my condition.
I then realised that my transition from being a person with a disability to somebody with a chronic debilitating condition has turned out to be the thing that has empowered my whole being and I vowed to positively promote disability which would enable me to dispel myths, labels, prejudices and discrimination against those with disabilities young or old.
I found my pleasure and entertainment and was determined to enjoy myself in Ghana, to live my time in Africa to the full and to enjoy my holiday.
Anyone who is facing adversity and is offered a good opportunity must do the same. The aged and people like me should really perceive Accessible Tourism as a means to enjoy a fantastic holiday and ultimately life itself.

Accessible Tourism part 1

•July 11, 2012 • 3 Comments

How I discovered Accessible Tourism

 

Accessible tourism is something that has been on my mind for some time. I stumbled across the concept completely by chance.

What is Accessible tourism? What is it all about? How did I reach the point where it became a focus in my life? Here’s my story.

 I was diagnosed with RA at the tender age of 5 years old and although I have lived and coped well, it wasn’t until 2011 at the age of 33 that I truly experienced the reality of travelling abroad as a disabled person and as a wheelchair user.

Being a British Ghanaian, the prospect of travelling to Ghana has always excited me. However this time I found myself feeling extremely nervous and anxious. Although I have lived with RA from childhood, I only became a wheelchair user in 2008. Prior to this, I would not have categorised myself as ’disabled’ but as ‘having a disability’. I was more mobile and enjoyed a good social lifestyle.

 I found it very hard accepting the new me when I found myself depending on the use of a wheelchair for mobility purposes. For the next few years I became a virtual recluse due to fear of being ridiculed and stared at. Looking back now I don’t actually know why. I do think however that I had overreacted in having to face my new circumstances.  I thought life would be impossible now that I had lost my independence. I didn’t know how to cope or where to start. All I knew was that I couldn’t go anywhere and enjoy myself and intentionally avoided being seen.

akua_ps’ thoughts for Inspirations

•May 15, 2012 • 1 Comment

ImageThe reality is you can achieve anything that you set your mind to do. I use a wheelchair to move about when outdoors. I have not walked unaided since 2008 when I returned from a fabulous holiday in Ghana. I desperately miss not being able to walk. 

I miss the ‘feeling’ of walking, the feel of my heart beat as I take steps, the ‘freshness’ of the air as it gentle brushes my skin. Walking makes you feel energised. As I cannot do this I have to find alternative ways to get that feeling. So, what options do I have? Just because I am a wheelchair-user it doesn’t mean that I am confined to it neither physically or psychologically. The ‘world is still my limit’. Doing exercises by attending a gym and  hydrotherapy sessions enables me to attain that feeling again and they are great for rejuvenating my Spirit. I love listening to music and watching cheesy Rom-Coms………(I know, even at my age), but who cares! Right?  They lighten my mood and it’s a great way to relax after a (very) non-exciting day at hospital. Wheelchair-user or not, we all have a responsibility to ourselves to have more ‘me time’ to rejuvenate ourselves. Right now, as I am typing this blog I feel pain all over my body. This is a reoccurring and familiar experience for and I know that I am not alone. I don’t let the pain stop me from living my life and accomplishing my goals. Millions of people from all around the world are living with health conditions that renders them with chronic debilitating pain. What I admire is this defiant approach to living our lifes rgardless of the obstacles we face. Just look at the extraordinary defiancy and ahievements of 32-year old Claire Lomas, a paralysed mother who recently completed the London marathon wearing a bionic suit.

I too have a dream……..that one day there will be more positive images of people with disabiliites  in our media channels taking the roles of politicians, entrepreneurs, fashion models and the like.

Let us unite in celebrating our differences

•March 20, 2012 • 2 Comments

 

Someone once quoted in a blog post ‘we are united in our differences’. We are united in our differences and this statement is something that should resonate with us all. It is a profound message. You see, time and time again we are reminded of how different we are and that somehow this is negative. It’s time we celebrated our differences.

Recently, I have been particularly impressed with documentaries about life as an individual with a disability. These documentaries focus on individuals with various disabilities and their families, recounting their personal experiences of the challenges they face.

Being a female with disability I use to feel extremely frustrated about being different. I would worry constantly that my body was imperfect, that I was not the same as my peers. I spent most of my teen years worrying, and hiding what I considered were my physical imperfections.  I would always try to please others rather than asserting my needs.

The turning point was when my debilitating medical condition being Rheumatoid Arthritis worsened. In my despair and emotional confusion with these changes, I became even more frustrated that I had a condition which was hindering me from achieving my ambitions. It also annoyed me that people could not see the real ‘me’ – see beyond my physical disability. All they could see was that I had deformed hands, would walk with a limp or used a wheelchair. In my efforts to persevere on, in spite of these challenges I came to realise that in focussing on my ambitions and goals, in pursuing and achieving these, I had in fact flourished. Why? Because I was doing what made me happy. I was celebrating being myself, being unique, being different.

Such television documentaries,  are challenging peoples’ attitudes towards individuals with disabilities. I, along with other people with disabilities, am living an extraordinary life. For me, the beauties of our extraordinary lives are found in our differences.  In making this reference to ‘our differences’, I mean to focus on not only the way in which people look, but in how we are able to pursue a life in the face of adversity.

We live and survive such daily challenges, battling against discrimination, prejudice, isolation and much more. This is why our differences should be celebrated. In spite of these challenges for instance, we celebrate our differences by continually striving in pursuit of our goals whether it be moving home, living independently, raising a family, starting a business, or choosing a career. The way in which individuals with disabilities undertake normal daily tasks such as walking, climbing steps, shopping, eating, and driving for example is remarkable.  These tasks are often tackled in an unconventional and uniquely clever way unbeknown to anybody else.

These great achievements shouldn’t be trivially overlooked by society just because they are deemed as normal everyday tasks that should therefore be easily accomplished. For a person with a disability, the opportunity of pursuing and attaining these things is usually denied or difficult, so when they are, this must be celebrated. The different ways in which life is pursued for individuals with disabilities makes the accomplishment of these goals extremely rewarding. I should know we take joy in completing such tasks that would ordinarily be very easy overlooked.

I feel that because of my own disability and experience, I perceive life differently. I see myself as being in a fortunate and unique position because of things that I have to consider at all times which abled-bodied people may not have to. I value the very simple things in life that others may take for granted. This makes my life even more fulfilling.

Having my particular medical condition has made me more resourceful, practical and efficient. I now apply this to all areas of my life and not that only concerned with my disability. I have been placed in various challenging difficult situations but rather than perceiving these as a negative, I rather have a very positive stance on them, even towards my episodes of hospitalisation!. These experiences have enriched my life and exposed me to what I call ‘the realities of life’. It has even strengthened my resolve and made me more sensitive to the plight of other people in general. My struggles’ have made me better equipped to deal with the drastically unexpected. I am disabled and proud, so, let us ‘stand united and celebrate our differences’. I certainly do!