Archive for the The Blogs By Robert Category

Never Give Up Hope By Robert

Posted in The Blogs By Robert, Week 04: Hope on August 1, 2011 by Cookie Has A.S.

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The last 18 Months have been the toughest that I have ever faced, starting with becoming single again; followed not long after that by getting diagnosed with Ankylosing Spondylitis (27th July 2010 will always be remembered.). On top of coping with the stresses and pains of dealing with the shocking news of being diagnosed with a chronic illness at what I consider to still be a relatively young age when I should really still be in my prime. The never ending credit crunch also continues to kick me when I’m down and work has been on a never ending downward spiral over the last couple of years as a result of those overpaid bankers and recent Government cuts have decimated the construction industry even further leading to a very high likelihood that within the next two months I will also be out of a job and feeling like I’m on the scrapheap at 33 years old. I have now put the house on the market and am waiting to see what the future may hold now that I have reached what surely must be rock bottom. Hope for a change in fortunes is all I have.

It has been all too easy to let feelings of doom & gloom pile up within me and succumb to the dementors, sucking all hope and happiness out of me. Every day has been a little bit more difficult than the last to remain positive and fight off the doubts swirling through my head. When you start every morning in pain and discomfort it can be really difficult not to start everyday in a miserable mood before you even leave the house. Throwing myself into the spondy community has been very therapeutic for me at a time when everything is crashing down around me. The hope that all the hard work with people coming together from across the globe with a common goal, leading to raising awareness of Ankylosing Spondylitis and many other Invisible diseases gives me hope. Hope that fellow sufferers no longer feel as alone in the daily fight against their own bodies as we are all dealing with many of the same difficulties. This is a way of taking my mind off things and gives me a hopeful feeling and a positive energy boost at a time that I need it to wade off some of the negatives.

As a great inspiration and fellow spondy Kelly says, I’m hurting but hopeful that things will improve…things can’t really get any worse, can they??. My personal view is that once you hit rock bottom, the only way is up and my hope is that the next twelve months will be a journey of positive emotions and many challenges will be overcome. I want to cling on to positive feeling and emotions and turn my current frown upside down.

I am hoping that when I see my new Rheum next week, she will get me started on TNF treatments as after a year of trial and error with various medication combinations, I am bored of seeing little to zero change in my pain levels. I hope against hope that I can see a reduction in pain in my future.

I’m also hoping that with the failure of the business and as a consequence, having to sell my house I can turn this dire situation from a negative into a positive opportunity and use it as a sign to re-evaluate what I want out of life and find a new venture be it here or a perfect time to give up on this Country and look further afield and move abroad where I can improve upon the current work-life balance (hopefully I’ll get to see the sunshine once it a while as well) and find a combination that works well with my 2nd job of dealing with Chronic illness. I really do hope this turns into a blessing from above and give credance to the fact that everyting happens for a reason.

I will write a follow up to this in a few months, once decisions have been made and opportunities pursued that will hopefully set me on the road to a more positive

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Regrets, I’ve Had A Few By Robert

Posted in The Blogs By Robert, Week 03: Regret on July 25, 2011 by Cookie Has A.S.

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Time for the latest MOW’er blog topic “Regret”

I have more than a few regrets in life and have found that being diagnosed with a chronic illness has forced me to review past life choices as well as forming new ones looking to the future.

If I could go back in time I would do many things differently and try to live life to the full and not put things off to do tomorrow what I could have done today.

My one biggest regret is that I didn’t take a gap year before starting work to travel and see more of the wonders of the world, as once you start working and leave the nest there is always something that takes priority of your time and money that prevents the dream from happening. Now on top of the usual blockers to upping sticks and travelling, is the worry of ankylosing spondylitis and it’s temperament not being conductive to sitting in one position for too long and that puts added dread into the thought of too many hours cooped up in a plane or car.

I regret that in the past too much of my life has consisted of working, eating & sleeping with not enough enjoyment thrown into the mix to make life exciting. My job (that I used to love) has over the last few years become a grind and a struggle as the construction industry is still in the toilet due to the Wa***r Bankers, with not much positivity looking ahead. Becoming ill does make you re-evaluate priorities somewhat, but having money to live off always remains the number one priority even though I would like to ease back to look after my health as I find it much more difficult to put the same efforts in as I used to.

When I was thinking about what to write about for this topic I found It impossible to not think of the song “My Way” when thinking about regret, so I thought I would include the lyrics. Frank sums it up pretty well I feel and also manages to slip in a Standing Tall reference into the song for us Spondy’s.

And now, the end is near,
And so I face the final curtain.
My friends, I’ll say it clear;
I’ll state my case of which I’m certain.http://wordswithspondys.files.wordpress.com/2011/07/frank-sinatra-3-commited-suicide.jpg

I’ve lived a life that’s full –
I’ve travelled each and every highway.
And more, much more than this,
I did it my way.

Regrets? I’ve had a few,
But then again, too few to mention.
I did what I had to do
And saw it through without exemption.

I planned each charted course –
Each careful step along the byway,
And more, much more than this,
I did it my way.

Yes, there were times, I’m sure you knew,
When I bit off more than I could chew,
But through it all, when there was doubt,
I ate it up and spit it out.
I faced it all and I stood tall
And did it my way.

I’ve loved, I’ve laughed and cried,
I’ve had my fill – my share of losing.
But now, as tears subside,
I find it all so amusing.

To think I did all that,
And may I say, not in a shy way –
Oh no. Oh no, not me.
I did it my way.

For what is a man? What has he got?
If not himself – Then he has naught.
To say the things he truly feels
And not the words of one who kneels.
The record shows I took the blows
And did it my way.

Yes, it was my way.

I don’t want to have many more regrets going forward, Developing a Chronic Illness has made me appreciate the good days more and to take advantage of them. If work doesn’t improve over the next few months and life changes are required I am going to look at it as a positive sign that it is time to change course and and take the risk with a new venture and possibly change of scenery and start afresh. When I look back on things in the future I want to be able to say that I have taken Franks message to heart and say “Regrets…I’ve had only a few

Feelings Of Guilt By Robert

Posted in The Blogs By Robert, Week 02: Guilt on July 18, 2011 by Cookie Has A.S.

Feelings of guilt can take on many forms when living with a chronic illness. I often agonise with myself when i look to the future and worry about whether I will become a burden to my family, when i can’t accomplish the things that i would like to do without having to ask for help.

I’m a very independent person and find it difficult to fully open up and ask people for help. It is a topic that I’m having to learn to come to terms with as I have to admit defeat now and again and keep reminding myself that somethings I just can’t do all by myself and not feel guilty when reaching out for help.

Looking back over the last ten years since the onset of symptoms from the early back pain and fatigue i am reminded that i have drifted apart from many good friends due to becoming less active and social than i used to be. There have been many occasions when I had to cancel evenings out drinking with friends or going to an event through tiredness and pain. Back before diagnoses I would start to think “maybe I’m just becoming a miserable old bugger” after a certain number of times of continually cancelling on friends the invitations start becoming less frequent. I feel guilty that these friendships were allowed to deteriorate before I knew the reasons behind my lack of involvement.

I have always been someone that has been, and always will be there to help out friends and family as that is my nature. It is my hope that I will still be able to take pleasure from continuing to help to the best of my abilities when people require it of me. This can be from a comforting word or a sympathetic ear and learn in time to be able to accept help from others for my own problems as easily as i give it with the feelings of guilt. In a way i should hopefully rationalise in my own head that the scales of the universe can balance themselves out. Or as Earl discovered in My Name Is Earl, Karma works both ways.

Being physically unable to do everything we once did, does not stop us from still being able to help in other ways. By helping out our friends and loved ones through support and love we can learn to not feel so guilty with our internal demons when we have to reach out for help and support in return. It is my hope that I can concentrate my efforts in becoming a more outspoken activist in the Ankylosing Spondylitis community and help newly diagnosed spondys to come to terms with the swirl of emotions that can overwhelm you when you become sick so they are more prepared for the mental as well as physical challenges that await.

We shouldn’t feel guilty when we can’t do things, we are not lazy or non caring people. Illness is by it’s nature restricting us from doing everything we would like.

 

What Does It Mean To Be A Patient Activist? By Robert

Posted in The Blogs By Robert, Week 01: Patient Activist on July 11, 2011 by Cookie Has A.S.

To me this is a topic very close to my heart. The hardest part of being diagnosed with a chronic condition affecting the rest of your life is the initial feeling of bewilderment and of feeling helpless and alone.

When I was diagnosed with Ankylosing Spondylitis, I like probably everyone else that was diagnosed before me and since, had never heard of this condition. I hope soon that with all the great efforts of a great many people, that will not always be the case. I hope that awareness can be raised to an extent that doctors themselves are much more familiar with the disease and diagnoses time can be significantly decreased from the current approx 10 years from the onset of early symptoms.

If it wasn’t for the advent of Social Networks from the likes of Facebook & Twitter and personal blogging, it could be a very lonely and isolated place not being able to enjoy life to the full and sometimes feeling on the periphery of life.

Friends and Family, although sympathetic don’t really know what you are going through as they can’t always see physical evidence of the effects of the Civil war being fought inside your body. It would be nice if we could wear a little traffic light on our heads that picked up the pain signals sent from the frontline of battle and switched from green to red depending on the pain scale on that particular day to alert those around us of what kind of shape we are in that day and please treat us accordingly.

Through searching out fellow sufferers via social networks a vast weight of burden is lifted (especially in my case) as we all become in our own way, however big or small a patient activist to someone. From being worried about a new medication and associated side effects, a new or extremely painful pain flare or just having a general bad day. All it takes is a quick tweet or post on Facebook and the support comes back at lightning speed from fellow sufferers with an encouraging word here, or advice from previous experience that can lift the spirits and help us get through the latest problem.

Through the use of Social Media in linking us to so many like-minded individuals all over the world, the world in turn feels a much smaller and comfortable place. Feelings of loneliness and isolation previously felt can be diminished from a feeling of, as Mulder would say “We Are Not Alone”.

Many of us don’t actually know anybody near where we live that are going through the same daily problems as we are. We may have to drive many hours to talk with another fellow spondy in person, over a drink and a natter. Something that is very difficult to do. Through a few clicks of the mouse however, we can meet up online any time of day or night with new friends. Here we can share our problems and worries and we no longer feel quite as isolated or alone. This can be medicine in itself, lifting us from the depression caused by feelings of frustration and pain and not being able to vent these emotions on friends and family all the time for fear of damaging our relationships.

My favourite Activist and Awareness Schemes so far have been the fantastic Hope and Apples Campaign and World AS Day that took place during April 2011. These events were a great way to concentrate people’s efforts and reached out to so many people across every part of the Globe. Through this I met many fantastic friends online that I now consider part of my extended Spondy Family. Through the Hope and Apples campaign, People were encouraged to share their stories with each other and spread the word about our invisible diseases. To show to “non Sufferers”, be they friends or family and help raise awareness and help them understand what Ankylosing Spondylitis is and how it affects every person differently. We are not all affected the same and one day could be functioning and feeling relatively normal and the next a completely different story. I like to think of it as a bit of a Jekyll and Hyde condition. Always keeping us on ours toes as to what kind of day we will enjoy.

In summary all it can take to be a  Patient Activist is helping just one other person through a kind word or a bit of encouragement online. That person will then be invigorated to help another, thus adding another person to the Spondy Family. In time the family will continue to grow and go from strength, one person at a time to become a movement that can really make a difference in spreading hope and awareness far and wide to the larger community as a whole. Hopefully one day when people experience prolonged early onset back pain, Ankylosing Spondylitis will be more in the forefront of Gp’s minds. It is my hope that years can be cut of the diagnosis time and medical routines can be implemented early in the disease before large amounts of damage are already done.

After reading this please reach out and help just one fellow sufferer today, to help many more in the future.

Robert Paterson

Posted in Meet The MOWer's, The Blogs By Robert on June 21, 2011 by Cookie Has A.S.

One way to improve your pain threshold….Get AS!!!

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I’m 33 and was diagnosed with Ankylosing Spondylitis in July 2010 after suffering with back pain for the best part of 10 years. I remember in the early days it would be a dull ache in the morning and I would find myself starting to take longer showers in the morning to direct the hot water on my back to get myself moving. I didn’t think much of it at the time and put it down to one of the joys of getting older and living on my own without having Mum to clean and cook and all the things we miss when going out into the big wide world. Over the next few years the back pain would come and go and I didn’t think much about it. Maybe I should be living a healthier lifestyle and not be up the pub most nights and shouldn’t be eating so many take aways…I’m just a bit out of shape I would think after having to stop and stretch every five minutes when out in the garden or on my feet for any amount of time.

In early 2007 I was in a car accident and suffered a whip lash injury. I had physio for a few sessions and was on painkillers. For a time after this I kept getting told all my problems were a result of this injury and my muscles would require time to heal. It was this period that was the hardest, nights of excruciating pain from back spasms. If I could describe it, it is like being stabbed in the back with a red hot poker with the sharp pain meaning you actually hold your breath for 30 seconds or so and are then afraid to move for fear of another attack and end up doing everything in slow motion (like a scene out of Baywatch). Also I found myself being scared to death when I could feel the onset of a sneeze. This was like being stabbed in the back and punched in the chest at the same time, sometimes kicking off a spasm as noted above and re-starting the circle of pain.

In early 2009 I decided that perhaps a lot of theses problems were being caused by the extra pounds I had gained since buying my first home (which on reflection was too close to the local pub) I underwent a rigorous health kick over the next 12 months and managed to shift 7 stone (98 pounds). For a while I thought I had solved the problem, I had more energy and the pains had lessoned a lot.

I was wrong however as in early 2010 I went downhill. I was lucky if I would get 2 hours combined sleep the entire night with constant tossing and turning. Turning over in bed, I was like a plank of wood. Also my neck and shoulder felt very stiff and very painful. This continued for the next few months and I was taking more and more painkillers.

I finally went back to the Doctors and refused to be passed off with the usual talk of it being to do with the car accident any longer and insisted that I get sent to see a specialist even if it meant seeing a shoulder specialist as that was causing me the most pain at the time in her opinion. Once I saw the specialist, he noticed that I was very stiff and sent me for an MRI scan and while I was there, I managed to convince him to scan my thoracic spine at the same time. After a long wait he called me into his office to go over the scans. The first thing he said was that he couldn’t see anything wrong with my shoulder but could see something showing up on my thoracic spine and ribs on the MRI. My first thoughts were, what the hell is it? Am I going to die? He looked at me and said, no nothing like that but that I had bone growth (fusing as I would later learn) showing up and that he thought I had a disease called Ankylosing Spondylitis. Myself, like 99% of people thought what the hell is that and spent the next week searching the Internet for information before going to see a rheumatologist.

When my appointment came around and I had the blood tests and x-rays done and he had finished prodding me and informing me how my lateral flexation was down at 20% and this was that etc. He confirmed that I did have Ankylosing Spondylitis and had tested positive for HLA-B27. Also he confirmed that some fusing had been going on in my thoracic spine and the x-rays showed evidence of damage to the lumbar spine. I finally felt relief that the pain I had been feeling was reel and I had evidence in my hand. Now I knew what it was, hopefully now was the start of getting some improvement and relief of the symptoms even if there was no cure.

I was initially started on naproxen, which after some early wobbles (including a trip to hospital after collapsing on a stag do…another story) took the edge off, but after a couple of months wasn’t really doing much to ease the pain and stiffness.

I subsequently have been on diclofenac with at first sulphersalazine (gave up due to rash) then Methotrexate. MTX was awful as I hardly had the energy to get out of bed and the mood swings were so bad and I felt so low I was worried I may do something. The last month I have been on Leflunomide with the diclofenac. Pain has increased, but I feel more myself again. Hopefully this combo will work otherwise TNF’s are the next step.

Also I undertake physio and Hydrotherapy on alternate weeks to try and loosen me up a bit.

Sorry if I have rambled on a bit, I am now trying to look positively to the future even though some days this can seem a very long and painful time away.