Pain, Pain Go Away

Pain, pain go away. 

Don't come back another day. 

If I cry from your wrath

Lay a tissue in my path. 

When I wake, I see my fears

Falling again covered in tears

Doctor after Doctor hear my pleas

Disease after disease is what they tell me

Fibromyalgia oh woe can it be

Chronic Pain for life shall stay

What a way to spend my day

One day of Activity Equals 3 days of Pain

RIDGE MEADOWS DISH

February 15, 2012

For most Chronic Illness sufferers the title is a familiar enemy. One single day of activity; be it, shopping, housework etc can leave the body exhausted and in agony for days later. 

Suffering from one Chronic Illness like Fibromyalgia is bad enough but when it is combined with others like Osteoarthritis, IBS, Chronic Pain Syndrome etc, it makes for challenging days at the best of times. 

Recently, I have had the opportunity to get out of the house for a couple of days worth of activities. Most people call them errands, I call them excursions into anguish. The excruciating pain that takes hold after a brief outing can last for a few days at a time. This is above and beyond the pain that is already there on a daily basis. 

As this disgusting disease progresses in my body, I'm recognizing the limitations it is placing on me both physically and mentally. The pain brings forth depression which brings on even more pain. It's a vicious cycle that repeats tirelessly.  

It is becoming more and more painful to sit in the car for extended periods of time. A trip into Vancouver for appointments is a nightmare to say the very least. I dread the bumps on the highways, the continual stop and go driving that jerks the body in a myriad of horrific ways. 

Using pain medication is fine when I'm not required to drive but they impair my judgement so much that I don't often drive anywhere anymore. I rarely have a day that my pain is lower than an eight. I can't recall the last time it was below a five. 

So, here I am post Valentine's Day and I'm barely mobile. There is no respite, no release and no light at the end of the pain tunnel. I am resigned to the designation of Chronic Illness Sufferer.  

The journey continues.....

Dear IBS

January 31st


Dear Irritable Bowel Syndrome,


You and I have been having this tug of war battle for a while now and I feel like I'm losing my footing. I no longer have days where I'm not chained to the bathroom. I never know from one moment to the next how much pain I'll have or if I can actually eat and keep the food down. 


I understand that you are a problem that hits world wide. I totally get that you don't have a cure and that treatment doesn't always help. My concern is that you are now taking over my life. I struggle to eat because I don't want the hassle of vomiting into the nearest toilet. 


You were not invited into my life nor were you ever really desired. You showed up, took over my body and gave me this shallow frail identity in lieu of my original strong frame. Thank you but you can take it back. 


I've sought advice from Doctors, seen countless Specialists, unending hospital visits and nights in emergency. X-rays, CT Scans, MRI`s, Blood work, you have demanded it all, yet you give nothing but grief and sorrow in return. 


Why did you choose me? What heinous crime did I commit to deserve this harsh sentence? 


I beg for mercy and reprieve.  Leave me to enjoy the rest of my years. Although, I know this request is falling on deaf ears. You are what you are: A painful, irritating disease. 


Signed in disgust 


Stomach.

Long distance travel and Chronic Illness

Long distance travel

and

Chronic Illness

We all dread it. Those of us who suffer from any type of Chronic Illness dread travelling for the holidays. While flying is considerably faster than driving, it can be as taxing on the body and mind for a Chronic Illness sufferer. 

Anxiety, cramped spaces, limited bathroom availability (let alone space), motion sickness, and above all pain; makes travelling at times virtually impossible. Even quick drives can be problematic. 

So imagine, what it would be like for someone who suffers from chronic pain (like Fibromyalgia, Chrons, MS) to sit in one seat for an hour, two, three. Even a 'normal' person starts to have body aches after sitting for a long period of time. For us, it's like a nouveau torture chamber. 

The idea of hoping in a plane for ten or twelve hours scares the hell out of me. Yet, it is something I want to do in order to facilitate a life long dream. Of course, the short 4 hr 50 min flight to the East Coast still poses a certain amount of fear and trepidation for me. While I want to fly, I don't want the complications that will arise from it.

Travelling also means packing medications, accessories and making sure that all documentation is ready to go (extra health insurance, vaccines, allergies, emergency contacts etc). This time of year is tough enough to travel in as a healthy person. When you compile everything extra that Chronic Illness sufferers have to contend with; it really doesn't make it look all that appealing. 

Making sure you are prepared for any situation that might come up will help make travelling a little less worrisome. (Airport  security not included here, that's a whole different blog all to itself )

Travel smartly, safely and happily this holiday season while remembering that a Chronic Illness sufferer is travelling too and could be sitting next to you, so be patient, tolerant and show compassion. One day it could be you. 

*quick tip* print off a copy of all your medication and dosages just in case you run out or they get lost (damn luggage handlers). Give a copy to a trusted person at home and carry one copy with you. This way, if you do have an emergency, there is someone at home that will be able to assist .

HOUSEWORK AND CHRONIC ILLNESS

To most people washing the dishes, doing laundry or cleaning the bathroom are mundane, necessary duties in order to maintain a home. For someone who suffers from Chronic Illness, those are milestones!

Some days even just folding clothes can be a challenge to large to conquer. There is no way to know what the next day will bring pain wise, so on the rare days that I'm feeling 'peppy'; I try and get as much of the housework done as possible. Usually, I end up in a heap of pain afterwards, but the attempt was made to feel normal.

The need for help has multiplied ten fold especially when it comes to bending, lifting and carrying anything remotely heavy. Grocery shopping is excruciating at best but I haven't got enough minions for that duty yet.

I would love to have a week where I could do my housework and still have enough energy to go out to dinner or watch a movie.

With no simple solution or cures and with the magic genie on strike, my house will just have to make due with what it can.

Now where did I put that bottle of Mr Clean?

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

MRI....CHRONIC ILLNESS UPDATE

After waiting for years and years (started Sept 2007), I'm FINALLY having a lumbar spine MRI. When I was in my early 20's I had a Spinal Tap to check for menighetis and it is now the location that is literally the pain of my existence. 


It's the one missing piece to the medical puzzle that I'm certain the Canadian Govt has been waiting for in order to vote in my favor for Canada Pension Disability. I haven't been able to work since the above dated and my health has continued to degrade to the point it is today.


The chronic pain syndrome, the fibromyalgia, the meniere's disease, the osteoarthritis, chronic manic depression and of course let's not forget the IBS and an undiagnosed stomach issue (down almost 40 lbs since August due to stomach issues) just didn't seem to be enough for them to make a judgement on. 


Of course the worst part of the MRI is the MRI itself. Since I'm so claustrophobic, the only way to get me anywhere near that damn machine is by making me completely and utterly medically stoned :)


So off we go to Royal Columbian Hospital and the trusted radiologist (have to say that for my own mental state lol) and in the loving and safe arms of my husband. He is so my rock and my biggest support mentally, physically and emotionally. He is my hero no matter what he thinks. I likely would've taken my own life by now if it wasn't for him. He keeps reminding me that just because I have chronic illnesses, constant pain and anguish, that I still have his love, the love of our family and friends and that sun always shines. (even if it looks like water droplets lol )


Wish me luck, my blogger buddies. 

DAILY TIP OCT 26 2011

DAILY TIP

Chronic illness means that sometimes even the easiest of tasks can be impossible to try or finish. Washing your hair can be like scaling the side of Mt Everest. Tying your shoes as difficult as trying to cap a volcano.

Smiling through the pain, you know you do it too.

Catching Up

I thought not having my laptop for a few days would be easy to contend with. I would just use my husband's desk top and putter like normal. Unfortunately, I forgot to take into consideration that my back is not suited for sitting at a desk anymore. I have to have my back reclined in order to do any typing on the laptop. I think I managed 5 minutes before the pain was kicking in. Needless to say, my time on that computer was extremely limited.

While the laptop was in being repaired for a manufacturer's defect, I spent time reflecting and contemplating what my life would be like without social media, technology and online interactions. What I discovered was quite troubling. I found that I felt more alone, disconnected and unaware of world activities. Sure I still had t.v. and mercifully "CNN"  but it wasn't the same. Twitter, email, blogging, it all allows us to connect on a global manner rather than just locally.

Being globally aware gives a different perspective on most things we can take for granted. Watching the rioting in Greece is nothing like reading the 'tweets' of someone who is there experiencing it first hand and sharing it with no thought of safety, just a desire to create compassion and support for a common struggle.

Of course, my blog is now a few days out of sync, but hey life happens and that is why most of us created our blogs in the first place. It seems weird to reminisce about when we were kids and televisions didn't have remotes or color and then gaze upon the modern PVR's, laptops, cell phones and wonder how we survived without them.

For me my pain and technology are virtually the same in thought process. I can't remember what it is like to not have either.

BEING THANKFUL on THANKSGIVING

Being Thankful on Thanksgiving

Every October and November Canadians and Americans (respectively) pause to celebrate 'Thanksgiving'. It's a time to rejoice in the fall harvest, connect with family and loved ones and reflect on what you are personally thankful for.  

This is my favourite holiday of the year. While there are other holidays throughout the year that get celebrated in a big way. Thanksgiving is a quieter holiday. It's not about opening presents or cramming your face with chocolate. It's about looking back in history to see where we have come from, where we are going and being ever so thankful for the ability to do so. 

While Thanksgiving has it's 'history' related to the 'Mayflower', Native Canadians/Americans and of course nature's bounty. It has become the most traveled day in the United States out of the all the yearly holidays. Not everyone celebrates Christmas, but almost everyone celebrates Thanksgiving.

Even with Chronic Illness, I can still find so many things in my life to be thankful for. The illnesses themselves have taught me a great deal about myself, my fortitude and above all humility. That is something truly to be thankful for.

PAIN is such a rush....NOT

PAIN IS SUCH A RUSH....NOT

The last couple of days have been very challenging pain wise. After a very long drive to the doctor's office, the normal wait time in the waiting room and then the rushed up out the door appointment left me in severe pain, deeper depression and still no answers. 

Doctor has no clue as to why I'm having so many problems with keeping food down. While the IBS is the culprit for a large portion of the issue, there are several questions that just don't have adequate answers. At least for me anyways. 

Of course, the rotten weather isn't helping much either. The dismal sky, along with the dampness of the rain leave me wanting a hot tub, a large bottle of Tinhorn Creek Merlot and snuggling under the blankies with my hubby. Alas, life doesn't always agree to your desires. At least hockey is on :)

Tomorrow is another day, but tonight I remain in a depressive painful mood. As "Annie" would say, "The sun will come out tomorrow".

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........