Over the last few years, I have met some remarkable individuals, young and old, who fight chronic pain and illness with the hearts of lions. I decided it was time to give the readers another view of RSD. Almost daily, you hear my musings, but this post is dedicated to a young girl named Felicia who fights RSD daily and intends to win this prolonged, arduous battle. I have presented her with nine questions, and she has answered them as candidly and eloquently as anyone ever could.
This is her story:
(Here is a link to her blog:
http://alessea.blogspot.com/)
1. When were you diagnosed with RSD, and how did you feel when you got that diagnosis and learned about what the disease entailed?I was finally officially diagnosed with RSD on the 13th of May 08 having been semi-treated since September 07 and had symptoms since March 06.
Initially I was relieved to finally have a doctor tell me those words, give a name to what was happening and write it on paper. I was beginning to doubt myself because for so long I had been getting no-where and being told things ranging from “you need to move to a warmer climate” to “stop focusing on the pain”.
But then when I asked the doctor questions and all he could answer was “we don’t know” I was upset, how can you give someone a diagnosis and then not give them any helpful information? I felt lost as to how I would get the help I needed. But I was proactive and have since been seen by a pain specialist who knows more about RSD and its management, he has helped me understand better and I have been educating myself so I feel more in control now. I still feel angry some times, why me? Haven’t I been through enough already? I’m frustrated because RSD has a mind of its own and it doesn’t like it when you try and ignore it, and I continually get upset with myself due to my limitations and then mad that I am so weak that I can’t just deal with it and continue with my life.
2. What areas of your body are currently affected? Has the disease spread?Currently the areas affected are my right foot half way up to my knee and then down the front of my thigh.
I guess it has spread, initially it was only my foot but now it’s my thigh as well.
3. What feelings do the words “progressive” and “incurable” stir up within you?The word “progressive” makes me feel scared of the unknown and helpless to do anything about the potential threat it poses, this condition is so unpredictable. I don’t like to think about the possibilities and try not to dwell on this as it doesn’t help and is certainly not an active coping strategy.
The word “incurable” fires up my fighting streak J I’m going to prove that wrong and beat this thing! The thing is, in the last 10 years the research on pain has come a long way and who knows what the next 10 years will bring?
4. Can you explain, in your own words, what the pain feels like to you?Imagine being consumed body and mind by pain so big you have no control over anything. You don’t know who you are anymore or what’s going on except that you would do anything to stop it if you could. It’s your constant companion, never leaving your side for a moment. You feel so helpless that crying all night is the only thing left to do.
There are so many pain feelings, like my foot is frozen stuck in ice, the intense burning cold pain like being in snow with no shoes or socks but so much worse and there is no end. The shooting, stabbing pain like someone is repeatedly attacking you. Even just light touch feels like I am being pressed so hard it is so painful, when people forget and touch my foot I have to fight off the response to attack them because of the intensity of the pain; I have done so a few times. The background pain that is just described as PAIN that gets worse as the day goes on, I feel so lucky if the meds have just left me with this for a little while.
5. What helps your pain? What makes your pain worse?Helps with pain?
Meds, grrrr. I hate taking them, I hate relying on medication to get through the day. I take 3 different pain meds regularly and have another one for when I need it.
I have a TENS unit that seems to help while I am wearing it, means I don’t rely on the extra med so much.
Mirror Visual Therapy is beginning to show signs of helping, fingers crossed it continues to be effective.
Warmth and elevating my leg
Relaxing as much as I can and not fretting about all the things I’m not doing.
Makes it worse?
Just things like wearing shoes and socks and having trousers and sheets and things touching my skin can make the pain unbearable.
Walking too far and being on my feet too much.
Slight cold weather
Sitting with my foot lowered
The feeling of water moving around my foot in the swimming pool, and also in the shower.
People touching my foot!
Doing to much physically or not doing enough, there is a fine line between these boundaries and I continually do too much.
Getting stressed or upset over things, its true that pain is harder to deal with when you stress yourself out.
Falling down stairs lol!
6. What areas of your life have changed?What areas of my life haven’t changed?
I have gone from being someone who never sat still to being someone who will sit on the pavement if there is no-where else available.
I no longer play any sports or run and though I sometimes go to my dance club, I am the one who sits on the side watching half the dances and I’m the youngest there!
I am learning that I (yes me) come first, no more do I say yes to everyone, no is now very much part of my vocab.
I think I am becoming more patient, although I still get very frustrated.
I am learning to set more realistic goals and not be so hard on myself in regards to achievements.
Spontaneity and socializing is so hard, it takes all my energy to get through the essential daily tasks with nothing left for going out and having fun. Luckily, I find that even though my studies are hard work, we have a lot of fun, I just miss not having the choice of taking part in the social club events.
I find that I rely on my family much more than I used to, there is nothing nicer than spending a nice quiet day relaxing at home. I think because I have more quiet time to think and grow and understand, I feel stronger in my religion. I am human and forget to ask God for help sometimes but when I do, I feel inner peace and regained strength to go on. Without this aspect of ‘growth’ I’m not sure I would cope as well as I do.
7. How do others respond to you? What helps? What does not help?On the whole, people just don’t understand (very few do anyway) what this thing means. People with RSD have doctorates in pretending; quite often my outward appearance doesn’t match my inner feelings. I get made to feel like I’m making things up or complaining about nothing, and am somehow to blame for what’s happened.
I hate being dictated to, I feel like the only control I have is being taken away from me and this stresses me out. I also hate the obvious ways people try and stop me from doing things, things I can and should be doing, don’t take away my independence yet please! I know I need help with some things and I know I have trouble asking for help but help me, don’t stop me from doing them completely.
I also feel sad about how I get made to feel like a burden and excluded by some of my so-called friends. I like them and if I was more capable they would include me more I’m sure, it’s just I think they feel like I’m too much hard work and a bit of a drag.
But for goodness sake don’t pity me-I have learnt so much, have so much more to learn and I would never understand had this not happened to me, I don’t need your pity.
I live for my precious family and friends; they treat me like they understand. Just knowing I have people I can count on to put me back on the right path when I wander helps. My pain doc and his wife and also my special physio are amazing; having health professionals who believe me and understand what I am going though makes all the difference. I feel justified and that it’s ok to feel they way I do sometimes and know that I can rely on them to take me seriously. Having others with RSD to talk with helps, no-one knows what we are going though better than a fellow sufferer and being able to share our ups and downs makes things so much more bearable.
8. What are your fears and anxieties concerning the disease?That even though it has been around since the Civil war, so many health professionals don’t seem to know what it is or even believe that it exists.
That I am going to be put in the ‘mentally ill’ box and, because of the stigma that goes with that label how will I ever be taken seriously? My own student health doctor sent me to a psychologist instead of pain clinic because “I have psychological problems”.
RSD’s unpredictable prognosis and the unreliability of current treatment. I scare myself thinking sometimes, what if the drugs stop working?, what if it spreads?, what if the university decide I cant carry on my degree?, what if those other doctors are right and this is all in my head?, what if I cant get a job because of this?, what if I never meet anybody special because I cant be as social as I want? The world is full of what if’s…
9. How do you feel about the future?I think it helps that I am a generally bright, bubbly, happy person (reading this probably doesn’t sound much like it) I get so much out of life and am a fighter and have set my heart on reaching some pretty big goals. I have so many good things in my life, I am truly blessed. I have the gift of brightening up other people, knowing I can do that means despite the harrowing thought that I may have to live the rest of my life with chronic pain, I can look forward to a life of sharing fun and laughter with many great people. I also have a pretty big support system now and they only make the future look rosy and inviting.
I’m currently studying a pretty intense program and my dream is to be able to finish it. I know I will because I am so determined to show that I will not be crushed by this. It gives my life so much meaning and motivates me to get up and carry on, I have so much to offer the world.
I am optimistic about the future mostly, sometimes the thought of the future overwhelms me but I am not going to let this beat me, I am not RSD, RSD is not my life-it is not my identity. In a few years I am going to be a successful grad with a lot of knowledge and unique experience to share with my patients. I also hope that one day I will be someone’s wife, someone’s mother; RSD is not going to rob me of that.
Life is always full of hope, never ever forget that. It may be hiding behind a cloud but it its still there.
Everyone has their own worries and I am not any different in that respect, just so happens that while my peers are worrying about if they have enough alcohol for the weekend, I worry about if I have enough meds!
I’m hoping that my new therapy program (good doc, meds, PT, psychologist) will get the pain under more control and then nothing will stop me!