Fibro Warrior of the Week (#1)
FWOTW: Pamela Sutherland
Location: Shawlands, Glasgow, Scotland.
Mantra: Housebound is no worse than Earthbound, it’s what you make of it. Multiple Sclerosis (PRMS), Fibro and more may have limited me, but they can’t destroy me.
We’re very excited and honored that Pam agreed to be our very first FWOTW! Many of you already her know her on Twitter, Facebook, and through her blogs. In this interview, she was generous enough to share some personal details about her illnesses, family, and passion for life. – FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Pamela: Who am I is a hard question if I really think about it. My name is Pamela Sutherland and for the first time in my life I am a person defined by just three “tags”. I used to have a list of them, but now I am “Adam’s wife”, “Teressa’s mother”, and “disabled”. The last one (disabled) is clearly why I’m being interviewed, and while it’s a label that took me some time to time settle into, I’ve come to wear it proudly.
I’m 51 years old and living in a world that 30yrs I could not even have conceived. I wasn’t callous back then, but rather I was just like everyone else – unaware. 30 yrs on and I have taken up the flag online to try and make more people aware of what being housebound really means, and how it is possible to live well and be happy even in what for most humans is an alien environment, as we are social animals.
Over the years I have traveled the country (Scotland) living in different cities. Born in Aberdeen, I settled here in Glasgow over 20 yrs ago, and like many things in my life it was a choice more than something that just happened. It is nearly 6 yrs now that I haven’t left my home for anything other than recent hospital appointments. My world consists of two rooms plus utilities (also the name of my blog), and a wonderful man – my second husband Adam – who I couldn’t exist without.
FD: When did you first suspect that something wasn’t right? What happened?
Pamela: I had been aware of things not being shall we say normal over thirty years ago. I had loads of aches and pains that didn’t match my activity level and my muscles seemed exhausted all the time. It is a little hard for me to separate out many of the symptoms as I also have MS, and which of the two actually came first I don’t know. The diagnosis of both took many years, my first symptoms started manifesting when I was a new Mum in 1982. At the time I was just 21 yrs old. No one listened or took me seriously until 2001, but by then I was so used to fatigue, lack of dexterity and poor concentration, difficulty with my balance, and just generally not feeling well, that it took what I now think was a bad MS flare for me to try again to find out what was wrong with me.
I was so used to fatigue when I got and married back in 1999, that my new husband was totally surprised when I mentioned it all for the first time in 2001. That’s just how normal it had all become.
I had learned to manage fatigue and pain on my own, as I had little choice, and although I have nothing to back it up, I think the Fibro appeared in 1996. That was the first year I remember it being there all the time without any breaks. I was so used to fatigue when I got and married back in 1999, that my new husband was totally surprised when I mentioned it all for the first time in 2001. That’s just how normal it had all become. He hadn’t the slightest idea.
Later that year, I went to the hospital for help with my MS. It seemed to happen a lot that by the time I would get to the hospital my MS would calm down. On this particular visit, without my MS symptoms hogging center stage, the Fibromyalgia (as I now know it) was clear for the doctors to see. I had never heard of it before, and at the time they said it may not have been previously named, and that many doctors don’t believe it exists. In any case, I had all the classic tender spots and these doctors had no doubt that I did have Fibro, but they thought something else was going on. Many test later came the Dx of Progressive Relapsing MS in 2002.
FD: When were you diagnosed with Fibromyalgia?
Pamela: 2001 I was sent to the local hospital, they did an examination followed by some x-rays and that was it, I had Fibro. I was basically given some Amitriptyline and sent home to get on with it.
FD: When you received your diagnosis, how did it affect you?
Pamela: I had never heard of it and what was going round and round in my head was that it was an auto immune condition; it was my body doing this to me. I researched on line in the evenings for weeks and weeks trying to find out about it, at that time there was little on line in the country nearly every site I found was in the USA. Even when I did find a site with info, it didn’t answer my questions. I eventually found a chat room and there was some great help for someone new to the condition, but it really wasn’t for me. I think I hung around for a couple of months gathering info and then moved on.
For me, it was that knowing that I was on a reasonably uncharted journey that scared me, I wanted to know facts, not possibilities, and they just weren’t there. I hadn’t adjusted to the reality of one illness (Fibro) when the proof of the next appeared. I had an MRI done so they could investigate my balance and there they were, my brain was covered in lesions, I had my MS too.
FD: Since then, how has your outlook on life changed?
Pamela: After more than 11yrs living in my world, there’s no comparison to the one I knew before. When you are chronically ill you find yourself changing your values and evaluating just about everything. Knowing there is no cure, no escape, has made me go the opposite direction that I have seen many others take. I made up my mind that I wasn’t going to have my life taken from me. When I first became housebound I could have easily have just sat in a corner and given up, but I made up my mind I was going to keep living to the max that I could.
FD: How does Fibro affect your day to day life?
Pamela: For about 4 years I worked form home full time. The company I worked for was great, but as I slowly got worse they changed where I worked and what I did to a certain extent. Last year I was made redundant, and although I tried continually I was unable to find another job. To be honest, although I tried I was constantly worried that I wouldn’t be able to fulfill a new companies requirement. I had many interested phone calls, interest that waned quickly as soon as I pointed out the bit about me being housebound. It was on my CV, but many missed it.
I have made my PC my outside world. Now, I’m friends with people from all over the world.
I can now physically do very little; I sit at my PC for most of the day. That might sound rather dull to many, but I have made my PC my outside world. Now, I’m friends with people from all over the world. For most people, neighbors are down the block. For me, they’re in North America, Europe, Australia, Africa, Russia, South America, the Middle East, all over.
I do sleep a lot, which I have little choice over. Normally I sleep for just over 12 hrs a day, but when awake I am on Twitter and Facebook, and I blog everyday. Some days I will play simple games – they have to be simple because my concentration is just not “there” for the ones I used to like. I have become absorbed by all of it, and found that it really is possible to be happy and active in the world, without having any physical contact.
FD: What can’t you do anymore because of Fibro?
Pamela: I can do almost nothing now, or at least nothing that needs energy. I try to group activities like getting something to drink, brushing my hair and going to the loo all in to one journey. My husband has taken over all the housework and chores. I have even had to stopped cooking, the concentration required to cook even a simple meal is not there, unless you like burnt food. LOL.
FD: Name something you do now that you never would have imagined doing before your diagnosis!
Pamela: Blogging! I would never have done this if I hadn’t become housebound. I realized that there were no sites that gave the nitty gritty of being housebound and chronically ill. So I do it. I hold back nothing and my life is now an open book. I talk about everything from how symptoms feel to how my mood is and why I feel that way. Every day I add more, and every day I realize again how much there is inside me that I want to share.
FD: What has been your experience with seeking medical treatment for Fibro?
Pamela: Medical help is a little strange now for me as I do most of it over the phone. When I need something I discuss it with my GP and we go from there.
FD: How has Fibro affected your relationships, friends, family, partners?
Pamela: My illnesses have lost me nearly all my friends. They slowly drift away when you can no longer be out there and part of everything. My family all live several hundred miles away, so visits were always limited, but not one has been here in the past 7 yrs. My Daughter was living in the USA until a couple of months ago, and although it wasn’t totally for me, she has said I was a major factor in her decision to return home.
I would say Fibro has actually brought us closer in many ways… We both know we are together forever.
I couldn’t have asked for a more loving and lovely person to spend these years with than my husband. He still works and between the two of us (my part being the cause of problems and his part providing the fix) we manage well together. I would say Fibro has actually brought us closer in many ways and we have discussed and seen many things together that might not have otherwise entered our lives. We both know we are together forever.
FD: What inspires you to keep on fighting?
Pamela: I don’t think I do fight. I have learned to get to know my illness and to work with it. Fight it and it kicks back. That doesn’t mean by any stretch of the imagination that I have given up. If you work with it you can have a good life, fight it and you cause yourself pain that isn’t needed.
FD: What advice do you have for other people who are living with Fibro?
Pamela: Live your life and enjoy it. Get to know your illness and be willing to share it with people you might not normally reveal anything so personal to. When others understand, they know what to expect from you and are ready to help if you need it.
Put what energy you have into being happy rather than being angry. Anger and grief will happen, but outshine them with happiness and you will be able to live a great life.
FD: Do you have a good Fibro story you can share?
Pamela: I had woken in pain in the middle of the night, and being careful not to wake Adam, I got up. I thought I would have a coffee and went into the kitchen to make one after lighting myself a cigarette. I had just poured the water into my mug and as I was stirring my coffee I started to feel really ill. The pain was blinding and my balance went mad.
Looking back, what I did and what happened was 100% my fault. I had gotten that telltale warning I know only to well, but on this night paid it no heed. I thought I could take myself, coffee and cigarette into the living room so I picked up my mug, and started out across the kitchen towards the window. On the way, I failed to steady myself, toppled, and bounced my head off one of the units and dug the steel bar handle of the cabinet door into my back. Everything went blank.
I later worked out that it was nearly two hours that I had lain naked and unconscious on the kitchen floor. I regained consciousness while still frozen and in terrible pain from my back, but I managed to stand up, discovering on the way up that I had scalded myself with the coffee. The mug mocked me, sitting pristine and unbroken on the counter. I stood for a while feeling terrible before heading to the living room to sit on the settee and lick my wounds. Then it hit me. Where was the cigarette I had lit? It was nowhere to be found on the kitchen side of the room divider, so I looked further. A quick scan of the living room revealed it’s final resting place. As I had ricocheted off the cabinetry on the way down to meet the kitchen floor two hours earlier, it had been catapulted over the counter into the dining area, landing on the carpet where it left it’s mark, a signature burn mark over 2 inches long. You know, the kind that fire department inspectors point to and say “Aha!” while combing the charred remains of a foundation for the culprit. Luck had been on my side, I thought to myself as I imagined the scene: Adam dreaming happily, my naked crash landed body in a heap on the kitchen floor, and my cigarette doing it’s best to incinerate us all.
Eventually I headed back to bed feeling worse than I had when I got up. The funny bit wasn’t so much about my two hours unconscious lying naked on the floor or the cigarette burn, but rather Adam’s reaction when I told him what had happened. He asked frantically why I hadn’t called out and woken him after the fall, pointing out that he would have called for help had it been him. I am no expert, but I still can’t see exactly how I could have done that. I still remember his bemused expression as I tried to explain just how stupid what he was saying was, and yes, I do still laugh at that image.
Follow Pam on Twitter: @Ltd_to_two
Like Pam on Facebook: http://www.facebook.com/pages/Living-in-a-Limited-World/
Don’t forget to check out Pam on the web:
Two Rooms plus Utilities: http://living-in-a-limited-world.blog.co.uk/
Touching Space: http://living-in-a-limited-world-to.blog.co.uk/
Two Rooms plus Utilities Companion http://living-in-a-limited-world.blogspot.co.uk/
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