I call these not so FAQ’s because a lot of the questions are possibly things people are too nervous to ask. I haven’t actually received these questions, just thought of things people have asked me over the years.
Is it ok to talk about your disabilities and difficulties?
Yes ask away, enquire all you like. I crave the care of people wanting to know more. I will gladly talk about anything I have experienced or have difficulties with. I just ask you to be respectful of my answers and understand that sometimes I might not answer clearly. Also communication is very key, I can easily forget to share things I struggle with. So talking and answering questions can help me realise things I need to ask help for.
So what is CRPS?
Chronic Regional Pain Syndrome here is a handy link with all the details on the condition. <Do you want to know more?>
How does it affect you?
I feel constant pain in my right arm from collar to tip of my fingers, the pain also affects my neck. When I say constant pain, this is not a slight headache or a scratch. This is constant mind numbing and excruciating, pain. The pain is often a sharp and burning sensation, but can throb and cramp also. It is agonising to contact, so simple things like pulling a t-shirt on can cause flares. Physically it has taken its toll, with my overall health being very poor due to a combination of inability to exercise and my lack of mobility. I walk with a cane, my head is tilted slightly to my right to compensate, my right arm muscles have atrophied and I have been able to raise my right arm away from my body.
Yup, its constant, in 8 years, I have 1 day where I woke up with no pain. It was like a miracle day, but it also gave me hope that I could recover.
I try to describe the pain as the pain equivalent of tinnitus, its constantly filtering over my vision, my mind and body. The pain scales for CRPS say it’s the most painful condition, I cannot say that it is more painful than what other people may experience, but I can say that having had severe injuries in the past, this makes them feel like a stubbed toe.
I constantly worry because of my excessive localised pain, I might miss other pains, that my body is warning of.
But how do you live with that?
With great difficulty! I rest when I need, I stop when I need. I have to accept being a dependant and rely on other people to do simple things I cannot manage. The constant nature of the pain, helps to make it predictable. Try to imagine when you had a really serious illness as a child; After a few days, you are still ill and perhaps its worse, but you get determination to do more, you have to live, you want to sit up and eat. Well its similar, I am still in the pain, but i find ways of channelling that, and focusing on the things I am capable of doing.
Imagine having a cut in the skin between your index finger and thumb, y’know, the webbing bit, actually, let’s make it a papercut. Ok sorry i just did that to make some of you squeem. Think now though, how much you say, oh I never realised how much I used that until it hurt to do it. Ok, so now is where it gets harder, imagine that pain, imagine not only the cut, but its burning, some acid has been poured on it, and internally its bruised and the bones around feel broken. Still with me? Now lets move that tableaux from your thumb webbing and put it on my neck, and down my shoulder into my right arm. Imagine all the things you can’t do because of that pain. Imagine how hard it is to just stand up, get dressed. I hope you feel like I am exaggerating, because if anything I am sugar-coating this. This is a reality for so many people like my self suffering from CRPS, chronic pain or chronic illness.
Can I hug you?
Hell yes you can. just go low round my waist with the arms! I love being hugged and looked after. just please be careful not to knock me or touch my upper neck and arm. Careful and caring hugs are welcome ALL the time!
Can I help?
Just asking this is a help. I do need to be more comfortable asking for help, so sometimes offering and knowing I have someone to turn to is the most help.
Physically if you are with me, I can’t bend down to the floor and pick things up, I cant leave the house because of movement limitations, I cannot do simple things easily. Sometimes not having to ask and having that support and care is what I hope for.
Loneliness is one of my biggest enemies, just keeping myself occupied. Being mostly housebound, I spend most of my days at the internet, reading, listening to podcasts or playing games. The human interaction is what I lack, people taking a moment out of their lives to care for me is one of the most heartwarming things. I crave the attention of others as a dependant, life can often feel like screaming in a room of people, but nobody can hear a word you say.
Taking the time to read my stories and understand me is one of the things I hope for. I want to raise awareness, and I cannot do that on my own. I need your help more than I will ever feel confident enough to ask for. The list of things I cannot do is endless, I need you help to manage more of the things I can do in my life.
What mental disabilities do you have?
Social Anxiety Disorder and Depression. These are both effectively a direct result of my physical condition. I have suffered two ‘Breakdowns’. These are moments where my brain has given up. I have wanted to be dead and seen no purpose for my existence. This isn’t like an event that suddenly happens. It is the act of hitting your lowest point. The darkness envelops your mind and you feel, completely empty of emotion and feeling. Oh except of course for the pain, would have been nice if that had left.
How long have you had it, and when was it diagnosed?
I woke up on July 25th 2008 and couldn’t move my arms, both at the time, my hands were blue and swollen. I rang the doctor and went in that day. Immediately signed off work, but CRPS diagnosis took until 2011.
Mentally my condition began to deteriorate after my dismissal from my job in 2009, but it wasn’t until 2011 was I referred for psychiatric treatment. I began Psychotherapy for my disorders in 2013 and ended late 2015.
Currently I am not in physical therapy.
Is there no cure?
Nothing solid, but there is plenty of positive stories of recovery. The pinnacle of medical advancements for CRPS seem to be coming out of North America and Australia. In the UK we only have one real specialist clinic in Bath, trying to get a referral for there from my GP is like going in and asking for a donation of £100000 to get private treatment. They look at me like I am mad to even ask.
Is it something you get better from?
Both CRPS and Mental Conditions, YES, definitely yes. If I didn’t have hope for that, I would be lost. I feel like I am in Mental Remission from therapy and in 2013 I could see absolutely no hope for myself. So there is hope for recovery from CRPS also, I am in no rush to find a solution. I have time to help more people up on my way up. I want to show more people we can get better together.
How much wood, would a woodchuck, chuck, if it could chuck wood?
If you have any questions you would like answering please feel free to comment or you can use the contact me page to drop an anonymous question.