Today is my third week in this new adventure called, 4Walls and A View. It has been very interesting to read the many comments I have received. The ones that have surprised me most have come from those who know me best. I have always assumed that most of my close friends know all the ins and outs of what my life has been like. However, in reading the comments, I realized that just isn’t so. And then the thought came to me…
How is it that I could have ever made that assumption?
While most of my friends totally understand how hard and challenging these illnesses have been for me, they don’t spend 24 hours a day with me. Probably 75% of my time is spent alone – just me and the pugs. That really hit me. I believe that this one characteristic of CFIDS/ME is probably the most dangerous for many who have either of these illnesses.
This past week I spent time reading numerous articles about Lynn Gilderdale. If you are not familiar with her story, let me share a short excerpt with you from her dairy…
Imagine you lived in one small room, in one single bed for 16 years since the age of 14. [...] Imagine having never been in a pub or club at 31 years old.
Lynn pulls no punches when she shares what her life has been like when she writes,
To see what every second of life in intense pain, feeling permanently and extremely ill, not just lying in a bed resting but 100 per cent reliance on others to care for my basic needs. I have survived because of tubes of medicine, pumps and drugs. Without all this modern technology I wouldn’t be here.
While Lynn’s illnesses is one of the worst I have read about, her story is not unusual. In another account, Nicola talks about how isolating having CFIDS/ME has been. She writes,
I couldn’t concentrate, couldn’t read or watch television, couldn’t have a conversation. So I couldn’t see my friends, [...] It was incredibly lonely. Some people thought I was faking it — neighbors, friends, school, doctors. I wasn’t making it up, I wasn’t being lazy though I was isolated and depressed. It wasn’t a mental thing but because I wasn’t leading a normal life there were mental issues surrounding it.
I don’t share these women’s stories with you to have you pity them but to support my position that the complete isolation and loneliness associated with these chronic illnesses is often a greater burden than some can carry. As I read Lynn’s description of living in her bedroom for 16+ years, I realized that even a prisoner is permitted to get up and go outside for an hour a day.
However, many with CFIDS/ME are not able to do that and the isolation and loneliness become more burdensome than all the other symptoms. Add to that, the disbelief by many within the medical community, and you have an incredibly challenging situation. According to one account I read, over 50% of doctors in the United Kingdom (UK) do not believe in CFIDS/ME. I found that astounding! I would hazard a guess, that those statistics are similar here in America.
How does one survive without hope? Without relationships? Without possibilities?
For me, I have had moments on this journey that I have found myself overwhelmed with feelings of loneliness. As someone who has never really struggled with that prior to being sick, it was an uncomfortable place to find myself. I found myself wondering what my purpose was? Who was I? If I can no longer function in the ‘normal’ way, then what does that say about me?
Obviously, I have found ways to deal with those moments of loneliness when they come. I have learned to be aware of the warning signs and reach out to my friends when the need arises. Social Networking has also been a great ‘connector’ for me. Additionally, my faith has given me the purpose that I needed. The validation that I sought. Then there is my writing. That has been a balm for my soul. There I can pour out all that I hold inside. There is something about putting pen to paper that is therapeutic to the heart, mind and soul. It has become my greatest life line between me and the world I must now engage with in a new way.
Even with all these tools, however, long periods alone can leave me lost. Despite that, I am fortunate in that I am finding my way through this maze called CFIDS/ME. There are many out there that aren’t so lucky. It is for them, that change must come. Understanding must grow. Compassion must arise. A cure must be sought…
Determined to continue forward,
Youtube
RSS
Flickr
Digg
Delicious
Technorati
Twitter
StumbleUpon
Facebook
Yes, this illness is very isolating and thank goodness for the World of Blog which gives us connection to others. It’s always lovely when a new voice is added to the online community. So welcome.
I have made the same assumptions as you, which is friends and family would understand my new limitations. It’s always a bit of a slap in the face when you realise they haven’t ‘got it’ yet. I try and put myself in their shoes and remember what I thought about ‘ME’ before I had it myself. I didn’t get it either. My brother thought I was a bit of a wuss until he had a girlfriend with CFS/FMS and got an inside view on it. The other thing, of course, they only see you or hear from you when you are relatively ok.
Eventually they start to join the dots. I got a call from my Dad the other day who had been reading about the Gilderdale case. I really don’t think he’d understood the seriousness of this disease until now, or even made the connection of what I actually had. But that’s how awareness is raised eh? Many others will have a new understanding as a result and that means more pressure for research. So she didn’t die for nothing.
Sorry, in a maudlin ramble. Keep bloggin’ girl!
.-= Jo´s last blog ..Stepping up =-.
Jo – Thank you for the welcome. It is nice to connect this way isn’t it?!
It breaks my heart, to be honest, that Lynn had to die to raise awareness. I think that should never have to happen. But you are right, in Lynn’s death, she became a voice for you and I.
I, too, am getting phone calls from family and friends with “ah hahs” as we call them. That is always nice.
You never have to worry about vomiting, laughing, rejoicing, venting, being maudlin, rambling or any such thing on my blog. It is here for you. All I ask is we don’t swear and we respect each other’s voice. So no worries about your rambling, okay!
Have a great day Jo! Thanks for brightening mine!
Another timely post, Dominique.
I am struggling with these very things. I feel so abandoned by those people around me…the very ones I thought I could count on..my close friends, my church, my extended family. A phone call or an email to ask, “How are you?” would go so very far….but it’s as if I’ve been forgotten. I am trying so very hard to not grow bitter (thus my absence from posting on my blog…I just can’t seem to say anything positive), but to direct that energy toward more positive things…like getting better.
I am thankful for my immediate family, my on-line friends and the internet. They ‘get it’, understand and accept me.
Linda -
I have been where you are, Linda, and I understand how hard a road it is. I had a church divide over my illness many, many years ago. I lost a marriage, I lost my job, my schooling, everything.
I think I finally determined for myself that my anger and frustration with other’s inability to understand what I was going through was because I felt disrespected, dismissed and disregarded. I came to a place where I had to understand that I can’t give people that power. This life is mine and mine alone and I have to make it work to the best of my ability.
It doesn’t always take the sting out of the lack of understanding but it does help.
Another thing that really helped me is to realize as Jo said earlier, that those who aren’t sick, have no frame-of-reference so it is very difficult to relate. For instance, I don’t get what it is like to be a man, so I don’t understand some of the frustrations they go through. The reverse works I am sure. It’s the same for chronically ill people. Well people can’t relate. There is no connection in their life to sickness. They have only known wellness.
I am glad you found my blog (and others I hope) and at least I and others who do have this illness can be there for you.
I am hoping and praying for some understanding in those around you and for some new ‘fleshly’ friends who can relate.
I hope you have a great day, Linda! You always make me feel special and needed. Thank you.
Thanks so much, Dominique. Once again….you’ve hit the nail right.on.the.head. (the feeling dismissed, disrespected
and disregarded part). Just one more question…when you said you finally realized you could not give those people that kind of power…would you mind elaborating a bit on how you went about doing that? I really like that idea…and know that is what I must do as well…but am having difficulty doing it.
Thanks, Dominique.
Linda – I’m thinking about writing my next post on that very question…so if you can wait one more day….I’ll answer your question!
oohh…great! can hardly wait to read it. Thanks, Dominique!
Linda – Okay…don’t put any pressure on me! LOL
It is one thing to be sick, but something entirely different when you are isolated and cannot get out.
The UK statistic does not surprise me. My thinking is that advances in medicine which help to pinpoint these types of diseases is moving far faster than what medical professionals can absorb. What I mean is that you know you have the disease, but doctors are not up to speed yet as to how these illnesses effect others.
My wife’s friend, who has Lyme’s disease, is not getting the support she needs. We live across the country from her, but I know if we were nearby she would be someone my wife would visit regularly.
One thing to take comfort in, Dominique. You are raising awareness about these illnesses. Even though we’ve known each other via the internet for some time, it was only when you began to address these illnesses did I understand the extent of what battle you face.
.-= Matt Keegan´s last blog ..Tim Tebow Super Bowl Ad Inspires =-.
Matt – I just want you to know something. Just because WordPress thinks your spam doesn’t mean I do! I think you awesome! Now that we have that cleared up….:-)
I agree with you that doctors don’t know all the information. I have had several tell me they just can’t keep up. But there are still many, many doctors who believe this is nothing more than laziness, or in our minds. This weekend, I must have visited 10/20 sites that talked about how they can heal us of fatigue. Everyone of them said silly things like get more sleep, eat better, take more vitamins, see a shrink. It was amazing to me that after all this time, there are those who are still thinking this way.
I think there are 2 other issues here as well. I think money has clogged the path to discovery and treatments. Even with the XMVR, there are already people making up the ‘testing kits’ and we are years from a definite course of action, if this proves true. That makes me angrier than anything. That someone is more concerned about making money off my illness than truly helping me get well..
The second issue, is unique to America. Our medical professionals are not trained with herbal remedies – are actually taught that medication is the only treatment – again money comes into play here. The sad issue with this is that there are many herbs that can help. My mom and dad cured our family pet of Lymes disease. And they did it through herbs. It took 2 treatments but Juliet is back to herself. The test verfied she is in the clear.
In Europe, the doctors use pharmaceuticals and herbs side by side. They are open to new treatments such a light treatment for cancer and what not. I really wish the FDA, CDC and whoever else would open that door here as well. But there have been recent attempts to classify herbs as drugs which will make it even harder for us to get relief.
Your wife sounds like a really compassionate and kind woman. You are blessed, my friend.
Thanks you for your words of encouragement. I need everyone one of them! LOL
Have a creative writing day!
Such a well written post, Dominique and spoke to me today after going to mypractitioner and telling her this is the worst I have felt in two years…etc. She said to me…”You are not as sick as you think you are”. I said nothing, but later realized how degrading and insulting that was. She as a healthy person cannot tell me how sick I am..even with her expertise she does not really know how I am feeling…sigh….after all these years it still happens. Sad…
I have not read anything on the girl who died…will need to look at that.
I agree that writing is such a healthy way for us to live when we are isolated and misunderstood. I look forward to reading more of your writing.
.-= Renee´s last blog ..Saturday’s Scribbles =-.
Renee – Oh my gosh! That just brought tears to my eyes! Oh! Please accept my deepest and sincerest apologies for her total disregard for you. I am so sorry you had to go through that Renee.
Thanks and I’m am glad that we now have a way, all of us, to communicate, encourage and to empower each other and ourselves.
Wow…head shake. I’m still flummoxed at this behavior…
Renee,
I read your comment and it reminded me of something my wife went through several years ago. She was having a lot of female problems and was very, very sick with it. She went to several doctors and nearly every one of them told her it was nothing to worry about, that it was just a normal thing for a woman to do. Without going into details, trust me when I say there was nothing normal about what Tammy was going through. We were finally able to find a doctor that did a thorough examination and determined she needed surgery. It’s a good thing we did because she had some tumors in her uterus that the doctor said would have almost certainly turned to cancer. That is one reason I have such a problem with the medical field. I find it very hard to trust them, as most of them come across as skeptics of their patients illness.
.-= LD Jackson´s last blog ..Dr. George Tiller, Scott Roeder, and domestic terrorism =-.