"I Believe YOU" are the most important words you can say to someone with CRPS.
Often being an "Invisible disease", it is understandable that people may often think that you are making stuff up. But why would any person in their right mind want to make up something so terrible as CRPS? The pain and burning itself is not something that you can fabricate or copy. The medication is not something that any sane person WANT to take, especially knowing what the possible side effects may be. So why is it so hard for certain people to believe that you can have something so devastating as CRPS? It seems that it is easier to believe that someone that had a knee injury when he was ten years old can predict the weather, than it is to believe that someone, that "seems healthy", can have constant complex pain that cannot be treated.
"I Believe YOU" are the most important words you can say to someone with CRPS. CRPS warriors do not need pity. CRPS warriors do not need quick fixes. CRPS warriors do not need false hope. CRPS warriors do not need to be ostracized from society. What CRPS Warriors need, is to be believed. The words, "I Believe You" carries great power. These three words can often be the only thing keeping CRPS from living up to the name "Suicide Disease". Save a life today. Tell a CRPS warrior that you believe them, not to antagonise them, but because you truly believe them.
Part of November being CRPS Awareness month is for reasons such as this, to make the world aware and educate people on Complex Regional Pain Syndrome in all its "Glorious" facets. So as part of my contribution to creating awareness I want to share some stories of warriors, that became friends, that I have met along the way. People that have been struggling with CRPS and who have experienced loneliness, being cast out and ridiculed, being disbelieved and cast aside even by their closest family members, friends, acquaintances - and all of this simply because people cannot comprehend the complexity of CRPS. Ironically this often happens when CRPS warriors experience good days. It seems that there is something in the human psyche that would rather look for the worst in people, than rejoicing with them when it is going well. We would rather criticize, than be glad for them.
One such story of suffering is of Matt Frank, a New Yorker, who has lived with CRPS for the last 9 years now. Please note that some of the images may be graphic, but necessary, so that you may understand his journey and how far he has come. Matt has CRPS Type II of the Lower Left Extremity, and here is his story:
Matt Frank - 53 years
April 2013: 
My day started out as any other normal workday. Working as a Commercial Property Accountant, I went for a spinning class after a long day’s work. As it was a beautiful spring night, I enjoyed the refreshing walk back to my New York apartment, looking forward to a quiet relaxing evening.
At my apartment, I decided to take a shower before sitting down for dinner. With my right leg already inside the bathtub, and my left leg outside the bath, I went to adjust the water temperature. As the cleaning lady came in earlier to clean the apartment, I did not notice that she had not flattened the bathtub mat completely on the floor of the tub. By the time I realised, it was already too late, as I slipped on the bathtub mat.
The predicament I was in, with my one leg being inside the tub, and the other outside the tub, caused me to land in a very awkward position, and not on my butt as would usually be the normal reaction for your body when you fall. The fall created a giant hematoma or blood clot on my Lower Left Extremity. The doctors feared for acute compartment syndrome (A painful and dangerous condition caused by pressure build-up from internal bleeding or swelling of tissues. The pressure decreases blood flow, depriving muscles and nerves of required nourishment. Symptoms may include severe pain, sensation of pins and needles and weakness of the affected area. For severe cases of compartment syndrome, emergency surgery is required. - Mayo Clinic)
It was an excruciating pain I could not describe. Ten days later, surgical drainage or fasciotomy was needed to treat my leg. (Fasciotomy or fasciectomy is a surgical procedure where the fascia is cut to relieve tension or pressure in order to treat the resulting loss of circulation to an area of tissue or muscle. Fasciotomy is a limb-saving procedure when used to treat acute compartment syndrome - Wikipedia)
June 2013:
In June 2013, a skin graft was performed overriding the trauma. I had no way of proving what triggered the compromise of the nerve. It could have been from the initial fall, or from the fasciotomy or even the skin graft. At this point I realise that it does not pay for me to look back. It is what it is, as like most of us, we get this condition through injury, or surgery gone wrong.
July 2013-September 2019:
During the period from July 2013 to September 2019, the affected region on my leg would cause symptoms synonymous with CRPS, but I continued quality of life. I'd say a pain level of not more than 2-3 out of 10 at most times.
When I did address this with neurologists, I was informed that it was a mild case of neuropathy or copper deficiency. My Primary Care Physician (PCP) even referred me to a well-known hospital here in Manhattan, where they performed numerous tests. Unfortunately, the MRI of my brain and affected area, was inconclusive and did not lead to a proper diagnosis of nerve damage. At this time, CRPS was also a term that the doctors, and myself, have never heard of.
Had I been diagnosed earlier, perhaps, it could have at least led to early remission, but seeing that this was an unknown field, I had no such luck. I was an athletic hiker at the time and found that over the counter Lidocaine patch worked for me, for a while any way.
October 2019
As time went on, CRPS symptoms progressed. Especially with allodynia (Allodynia is defined as "pain due to a stimulus that does not normally provoke pain." An example would be a light feather touch (that should only produce sensation), causing pain), burning, and tingling. Especially nights were difficult, and gradually the symptoms started to spread to my foot, and eventually to my toes in my right foot.
May 2021:
As I needed clearance for an operation to fix a torn meniscus, my PCP sent me to see a Pain Manager as my CRPS symptoms were progressing.
June 2021:
By June 2021, pain was now constant and effected all quality of life. Two pain doctors and a neurologist all diagnosed me with Type 2 CRPS - unfortunately the diagnosis was 8 years too late for it to go into remission.
July 2021-Current:
So by July 2021, I had to quit my job that I proudly held since I graduated college. I started with all possible treatments in the hope that some, if any, would give me some relief or bring my symptoms into remission. Yet, I have been living with CRPS for so long, undiagnosed, that Pain has become the norm. Not only the physical pain, but also the mental aspect as well. Constant lack of sleep, painful physical activity, loss of my mobility (I need cane at all times), just doesn't equate to make one look forward to everyday. Wouldn't be human if not. This is just some of the awful symptoms that I have to deal with every day.
Yes, CRPS has been a thief, and robbed me of everything across the board, however, I will not let this define me. I will never give up hope, as I will forever find a means to deal with it. My next step is a DRG stimulator (Dorsal Root Ganglion). (DRG stimulation therapy is a new type of neuro-stimulation therapy designed to manage difficult-to-treat chronic pain in specific areas of the lower body, such as the foot, knee, hip or groin.)
Yet, as much pain as I have to endure, I try to make it a point to be active - although under my own terms. I focus on walking, stretching or going on bike, even if it is only for 20 minutes. I work out my arms and other leg so as not to have the symptoms spread.
The allodynia and coldness is constant. The atrophy and dystonia has made walking and even standing quite uncomfortable. I am always at risk of tripping. Yet, I'm not going to lie in bed all day, taking meds that masks the pain, leaving me too exhausted to get up. I choose to rather dial up some pain, coping daily, than to be a "slug" in bed all day.
When it comes to seeing family and friends, I do my best to do so. I plan accordingly, so as to preserve my energy for those days. Otherwise known as spoon therapy. Of course, I lost a lot of friends, colleagues, and acquaintances in this time. Yet, even without this terrible diagnosis, we probably all do. People don't understand how just wearing a sock, slipper or sneaker is quite painful, and even bathing has become a tedious task. I avoid going out to restaurants, as wearing slacks is annoying. Why should they understand, as they don't experience what I am going through?
It is not all doom and gloom however. Although I have become a great actor in not showing my pain, I have not lost my sense of humour. I take great pride in being a great uncle and helping others with this diagnosis. I am also more charitable than ever, which is quite humbling. As I look back on my past, I would certainly entertain some of the little things that bothered me. I would trade those things any day in return for CRPS!
Change is part of life. All tidal waves can be riding out and accepted. Therefore, I have made the decision that instead of waking up with a mantra that "if I'm not in pain, it means I'm dead", I replaced it with "unwrapping each day like a precious gift."
Dealing with this every day, with the lack of treatments, and of course the excruciating pain is something that none of us signed up for. Yet, that is why we are warriors!! - Matt
"Too late" does not mean all hope is lost
Initially the plan was to have five chapters, which turned into eight, which turned into ten, and now by God's grace has brought me to chapter twelve. I am blessed to have been able to share my journey so far, and more so to be asked by many of you to continue to do so. I think that not only my journey, but also the journey of so many others out there that are suffering, whether it be with CRPS or any other disease that is robbing them of quality of life, need to be told firstly to create greater awareness, but also to encourage other warriors - and even people that may be going through other hardships in life, even if not a terrible disease. People need to hear success stories. They need to know that suffering does not always need to end in suffering and negativity. They need to know that they are not fighting their battles alone, that everyone has their own battles to fight, but that there is HOPE. They need to hear that it is possible to have quality of life, even though their quality of life as they have known it, has been robbed from them. It may not be what they set out for it to be, but that does not mean that their lives are over.
Like Matt also said here, Change is part of life. At the end of the day your attitude is what matters. Matt made the decision to change his attitude from "waiting to die" to seeing every day as a gift of new life and new possibilities. He chose to continue exercising, even if it is hard and not what he has been used to all his life. Although his diagnosis came 8 years too late to reverse the symptoms or put the disease into remission, he did not give up hope. He made a decision to deal with what he had, and to do everything that he could to prevent it from spreading any further. Matt is one of the unsung heroes that took something so bad and life altering, and decided to do everything in his power to turn it around and to be an inspiration to others.
People that deal with something like CRPS need to know that their lives matter. That their struggles are not in vain. Although they themselves may not see their purpose any more, they have still so much to give to the world.
Being part of the solution
For the last couple of months, I have often felt like a guinea pig - trying different medications, trying different coping mechanisms etc. The fact is that CRPS is very complex, and there really is no one type of treatment that works for everyone - if any. Doctors, psychiatrists, phycologists, therapists - most of them learn through studying real life cases. And as most of them does not go through these experiences themselves in order to really understand what we are going through, it is as much a learning curve for them, as it is for us. By learning through my experiences, they may be able to help the next person. And perhaps in a year or five, by studying my experiences, who knows, they might perhaps be able to develop the right medicine or treatment for me. So while I often feel like a guinea pig, I do realise that in the bigger scheme of things, I may be contributing to a world that is yet to learn so much about CRPS and how to deal with it.
I can be a part of the problem and just accept that I have CRPS and be negative and wait for the disease to become worse and give in to hopelessness OR I can be part of the solution. Even if I have to live with this for the rest of my life, my experiences can help others to find hope, can help doctors to better understand and possibly develop new medication and/or coping techniques. My life matters! Yes, for now, there may be a lot of things that I can not do as before, but that does not make me useless or hopeless. If my story can touch one life, can give hope to one warrior, can inspire one person, can help one person to better understand CRPS, then my life have great meaning.
I want to challenge you to reach out to one person that is suffering during the month of November - CRPS Awareness month. And if you do not know someone with CRPS, reach out to someone that is suffering with some sort of chronic pain or disease. I want to challenge you to tell that person that you believe them, and to sit down and listen to their story...REALY LISTEN - without judgement, without trying to fix them, without pitying them. Clear your mind and listen so that you may hear their heart and that you may understand and empathise. Often all they need is someone that will listen to them and believe them!
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