WHAT CAN I EAT TODAY?

Such a simplistic question should be fairly simple to respond to right? Unfortunately, that is one question I dread these days. Its the unending roller coaster that is my stomach that dictates how my day will go food wise. One day, I can eat whatever and experience discomfort that is moderately tolerable and the next day, even water makes for good porcelain god worship. 


I could handle not eating very much provided what I did eat stayed down. The violent bowel explosions, excruciating stomach pain and depression that comes from a disappointing meal attempt make it so difficult to even want to eat.  


While I am enjoying the weight loss (40 lbs approx), the rapid loss scares me greatly and the lack of answers surrounding the issue worry me even more. Sure the label of 'IBS' (Irritable Bowel Syndrome) is fine but it doesn't quite engulf everything I endure on a daily basis. Add that to the Fibromyalgia, Meniere's Disease, Osteoarthritis and chronic Depression and you have the medical concoction that is my life. 


I am well aware that there is no cure for any of the conditions and aware that medications only 'help' control the symptoms and 'slightly' ease the pain but really don't heal. The ongoing fight with  government to get my 'disability' pension is wearing me down but I am not giving up. I know that work is not an option for me anymore. The amount of pain may vary from day-to-day but it is always there. 


I wish that there was a magic wand that could make me and everyone else who suffers from Chronic Illnesses happily healed. Until then, I guess I'll just have to wait patiently ha ha and endure every day as it comes. 


The sum of my pain does not define me as a person, I define myself as me. I just wish I knew what that definition was. 


cheers

Brave Face

Putting on a Brave Face

Living with Chronic Pain has presented several challenges without many rewards but the hardest challenge by far for me has been answering the dreaded question: "How are you feeling today?" I can put on a brave face and say, 'not bad'. That is the answer that can cover a lot of things without getting into many details. The problem is, 'not bad' isn't good enough for some people and they need to know more. We rate our pain on a scale 1-10 but sometimes that just doesn't work. I can be at the lower end of the scale (for me that is a 5) and feel worse then when I'm at a 10. It is all contingent on where the pain is for that time frame or if it is from a Fibromyalgia flare up.

Flare ups are the worst to quantify into a statement because no two are the same. So, I'll smile and say 'I'm okay', but really I feel like I'm going to die. Sure it's lying to a degree but I don't want the pity party that comes along with 'I'm sorry you are in so much pain'. That isn't what I need. What I need are answers as to why I am subjected to this god forsaken disease? Why isn't there a cure? Why do I need to take all this medication when all it's doing is rotting the rest of my body that was functioning properly.  Why can't I stop crying and not sleeping because the pain is so horrific that I can't get comfortable? There are so many more questions without answers that it causes so much depression as well. 

I think for me, personally, hiding the depression is the hardest thing to do. I can put on the brave face for the pain but not so much when it comes to the depression. That unfortunately, you can see in my eyes. That is something you just cannot hide. People can see the sorrow in my eyes, the tears that have been shed repeatedly because of not being able to stand the pain. I was never really a 'winter' season athlete, so the winter is not as depressing activity wise. During the summer, however, the depression is much worse. I was very active. I loved to dance, swim, play tennis, play baseball or just to walk on the beach for hours. That is the hardest for me. I live so close to the ocean that it pretty much kills me inside knowing that I can't walk the 'Seawall' like everyone else in Vancouver. Hell it pains me that most days I can't even walk to get the mail (which is in a box 2 houses over). 

One of most frequent places I put on a brave face is in the kitchen. I love to cook and bake. Being able to roll dough, fondant or even just stand to peel veggies or prepare a meal is virtually impossible without having to take several breaks now. I loved throwing dinner parties and preparing elaborate meals for special occasions and holidays, now it's a trial just to make a daily meal. But I'll smile and not say a word to anyone except my husband. I've given up trying to really hide my pain from him. As he knows me better than anyone how much pain I'm really in from day-to-day. Sometimes, that is even minute-to-minute.  After multiple visits to the hospital because the pain has been unbearable, I'm fairly certain he can read through the facade and see my soul slowly dying inside. 

I guess what it boils down to is that I really dislike being asked how I am feeling and would rather have someone ask 'What can I do to make your day go a little easier?' or better still 'How would you like to cry on my shoulder for a while?'. A good cry is sometimes better than a doctor visit. It doesn't help the pain but it does ease the sorrow off my chest even if it is only temporary.

My brave face will be there right until they bury me or so I hope.

Adopted and Illness

Being adopted has placed a variety of obstacles in my path over the years but none as powerful and as frustrating as my medical background. Every time I visit a doctor or have to have a test at a hospital, I cringe with the question 'Is there a history of this in your family?'. 

In recent years, the Province of Ontario has opened all the sealed adoption records. Allowing 'adoptees' like me to apply to get birth records and medical histories. The problem lies in that most birth mothers were not so 'open' with their family histories and/or medical records to adoption agencies etc. It's even worse when it is a single parent adoption like mine. My birth mother did not divulge a name for my birth father and with that no history, no medical information, just a large empty frustrating void.

At 44 this has become a more critical situation for me as my health has taken a huge twist and answers would ease a great deal of stress surrounding my illnesses. Finding out if they are genetic or spontaneous would help not me but my daughter as well. Being able to tell my daughter that my illnesses are a fluke and that she isn't destined to be stricken with Meniere's, Fibro, Osteoarthritis, Hypoglycaemia and Depression. 

The journey is going to be a long one I'm sure but all I can do is press on and hope that there are answers out there for me. 

the quest continues......

Weather and chronic pain

As many chronic pain sufferers can tell you, anything can be a trigger to set off a cascade of body aches, depression and a strong desire to find a small hole and hide away from the world.

For me, it's the weather that adversely affects my daily activities. My body is almost like a barometer, in that when the weather is going to change my body tells me immediately. The pain is unbearable and even my strongest of medications doesn't help. When the sun is shining and the temperature is moderate (65-75 degrees f/14-23 degrees c), the body aches ease a certain amount but that doesn't mean I still don't get flair ups during the summer. Cold, wet, and humid are villians and I don't even want to get started on what happens during snow season.

There is no perfect weather location to live because weather and chronic pain are just so unpredictable. As I stare out at the fall season hitting the west coast, I know my happy days are quickly coming to a close and the long painful winter season is approaching.

Arthritis, fibro, chronic pain syndrome and bad weather are really not good bed fellows.

But life goes on........

Living Within the Chains of Chronic Pain

It's been a very hard and long road to get me this far. Hundreds of doctor appointments, countless exams, x-rays, medications and blood samples to figure out I suffer from Chronic Pain Syndrome and Fibromyalgia. On top of those, I am already contending with Meniere's Disease, Osteoarthritis, Hypoglycemia, IBS and chronic depression.

Having to stop working full-time in 2007 was a huge set-back and an even harder mental adjustment. I still struggle with the fact that I can't do the things I used to do years ago. I was an avid dancer, a jock who enjoyed tennis, football, baseball, volleyball (you get the idea) and now I'm relegated to the sofa or bed because the pain is so bad.

The constant intake of medications for everything makes for an interesting morning cocktail. 15 pills to give me the ability to get out of bed and be somewhat functional.

Functional these days, is being able to wash my own hair or stand alone in the shower. My constant dizziness and frequent falling makes bathing alone difficult at best. Even the heat of the water can cause me to fall and pass out.

I struggle with mobility the most. Getting around is extremely painful and walking just to my mailbox can be insurmountable task. I use a cane and have a walker for when it's really bad. Lately, I've been looking at scooters and wondering when that is coming.

So many people just look at me weird when I say I have 'Fibro'. Most don't understand how negatively it can impact your life and the lives around you. My husband has been beyond supportive and I'm sure that my inability to do things as easy as being on the back of his motorcycle, concerns him greatly. Never mind the disappointment when we can't go somewhere because I'm bed ridden.

After fighting so long, I'm forgetting what life was like before I fell into the pit of perpetual pain and anguish. I wish there was more tolerance and understanding for those of us who suffer from Fibro and certainly wish there was a cure.

Who knows, maybe the cure will come before my daughter gets afflicted too.

For now, we just keep struggling along and making people aware that a healthy life should be cherished and encouraged.