The Reason for This Site

You're probably wondering why someone would put up such a site as this. So here I am about to tell you. I have a chronic illness, actually I have two of them which some think is actually the same illness with different aspects.They are Chronic Fatigue Syndrome (which is a very wrong name for this disease) and Multiple Chemical Sensitivity (which is equally confusing. My husband and son also have one of them, Fibromyalgia. I say 'one of them' because often FM and CFS are looked at as being like two sides of the same coin and I also have some FM symptoms. These illnesses can really limit your life sometimes as it did mine just this week when mom passed away. Here I am over 1600 miles away from her and I have problems sometimes going as far as the corner grocery store. I'm very sensitive to fragrances which makes attending anything in public groups including funerals most impossible to do. So this week I was not able to attend my own mother's funeral or go with the rest of the family to her family home and burial place. This is most upsetting. Because I could not attend, could not meet with old friends and see relatives I haven't seen in years, couldn't be there for my adult children or take my youngest I decided to share what I could here on the net with you. Its my way of being involved irregardless of the limitations I have. It allows me to hear from you all too. (so please do sign the guest book !).

Now that you know the reason for doing this site I'll explain a bit more about MCS, CFS and FM. Many other sites on the net have much more and better information you can look up so I'm not going to go into a lot of medical detail, check out the other sites for that. What I want to attempt to do is share with you just how difficult it is for those of us who are ill to do things that you often take for granted and about the emotional impact in situations like this.

Briefly CFS is like having a chronic state of the worst flu you have ever had while wearing a cement suit and trying to walk through a mud hole up to your neck while blindfolded. That's the best way I know how to explain it. Now I will try to explain that. Think back to the worst case of flu you've ever had. Do you remember how hard it was to drag yourself out of bed just to get to the bathroom? You ached all over, you body felt heavy and weak. You felt slightly feverish and tiered headed. You may have had a headache, sore throat and other weirder symptoms. All you wanted to do is pull the blankets over your head and wish it would hurry up and go away. CFS and FM has many of those same symptoms plus more. Now the wading through mud part while blind-folded... Remember how heavy your limbs felt? Remember that fuzzy headed , dizzy feeling? Possible a bit light headed, you couldn't concentrate on anything important, couldn't add two plus two let alone think straight enough to balance your checkbook. Every movement took such effort it left you even more exhausted. This too is like CFS except CFS doesn't go away in a few days. Part of the frustration PWC (people with CFS) have with other's advice is that most often others do not understand that its not just a matter of needing more sleep or of pulling yourself up by your bootstraps. Its not like having no legs where just having a wheelchair would solve some of the problems. It affects your thinking processes, your emotions, your immune system, your muscles, stomach, everything. There is no aid or magic pill to make you feel better. And most people with CFS and FM also have allergies.

FM is much like CFS in symptoms except that FM means PAIN. Some people have just CFS and have more cognitive problems than those with FM. But people with FM hurt everywhere all the time. Sometimes its like someone is playing Russian roulette with a voodoo doll of you. All pain seems greatly amplified. Even the weight of clothes on your body may hurt. FM is NOT just having some aching muscles. FM is excruiating pain that even the strongest analgesics and morphine won't totally dull. It also prevents you from getting into stage 4 sleep cycles, deep sleep. So you may be in bed for hours but are waking up several times a night and get up the next day and feel like you went bowling and someone thought you were the pins!

MCS feels like living in a world where even the most benign things may seem to have it out for you. What other people take for granted and enjoy may threaten your very life. Typically people with MCS were exposed to some level of toxic exposure which precipitated their illness. For me it was living too close to an avocado grove where they did aerial spraying. Chemicals are not safe for anyone in high amounts. Even small amounts of some chemicals can cause problems for all people. You may be using some household cleanser you used for 25 yrs with no problems at all but then find one day that your body has had enough and you begin to feel sick when exposed not just to it but to other chemicals too. MCS can affect any system in the body from the brain to the big toe. MCS can kill you. Even standing too close with someone wearing perfume or the wrong deodorant may land you in the emergency ward in a life threatening condition. Because exposures can cause such extreme physical reactions, and brain reactions too, most folks with MCS find themselves confined to their homes which they have already cleared of as many offenders as possible.

All these conditions lead to isolation. And because they are so'hidden away' no one sees the struggles they go through in their daily lives. You may think they're fine because they don't LOOK sick, or because when you see them they seem to be doing ok. Thing is you wouldn't see them when they are not. They wouldn't leave their house! The media has done a very poor job of educating the public about these illnesses. When there has been coverage its usually been about someone who claims they had it and through this or that great treatment are now well. Statistics do not bare that out. No one WANTS to be this ill, the limited I assure you. Only when these illnesses are explained properly to the public and the public becomes at least as familiar with them as they have become with MS (which also was said to be 'all in the head' at one time) will people with these illnesses be given more consideration and help. Sad to say that has yet to happen.

So what does that have to do with this site? When my mother died last week I hadn't seen her for a while as I couldn't travel. I can't fly because of MCS and recycled air full of fragrances. And there was no way I could travel the many miles between me and the funeral either. This meant that I would not be able to say my last good-byes there by her casket or be there for my adult kids and grandkids. I didn't get to see the cousins and aunts and uncles and old friends. I had to grieve from afar and only my husband knows why I am sad. I have to miss those things. And one other thing no one likes to talk about - fiancees. When you can not work a regular job with regular pay everything becomes a 'luxury'. So this site was my way of saying good-bye to my mom and sharing the time with friends and family afar.