I hope you all don’t mind but I thought I would air my thoughts in regards to cognitive function in Chronic Fatigue Syndrome.
It is an internal debate that I have been having for some time. What hurts more, having normal global intellectual function only to be taken away or never having it at all and life being just as you know it? None of us are any strangers to grief and pain but I guess I would like to know what you think and hear your stories.
There is the old saying ’It is better have [fill in the blank] than to never have [fill in the blank] at all. I tend to agree with this statement even though right now I am having difficulties accepting my altered circumstances.
This is an ongoing frustration but I am still learning to live with it and try and strengthen my abilities without setting off a full blown crash which will leave many bed bound and unable to think or talk at all. Imagine that, being afraid to think because it could result in having to be showered and hand fed which is the absolute opposite to the life you lived a few short months ago. This will inevitably lead to a pity party, table for one.
Research shows that objective cognitive testing demonstrates long-term and short-term memory impairments in addition to slow information-processing, impaired control of attention, trouble with thought-processing and verbalising words which resulting in slurred speech, if any words reach your mouth at all. These cognitive impairments (as are all symptoms of CFS) are exacerbated upon any kind of physical exertion. The physical exertion mentioned can be from just taking a shower or walking to and from the water closet. From personal experience, going into a medical appointment on my own is my most daunting task as I know I will have to have been transported there, walked into the waiting room and wait for an hour for the doctor who is running behind schedule, sitting in uncomfortable chairs with a toxic environment without any support, thus requiring a serious amount of physical exertion to remain upright, then brought into the doctor’s office to be asked questions of a serious nature that I haven’t been able to predict and prepare answers for in advance (which is why I have to take my mother along as a translator, which you then have to be prepared for the raised eyebrows of the medical professionals as to why a ‘seemingly’ healthy intelligent young woman of 26 needs her mother with her).
Answering the phone at home also gives me nightmares as I never know who is going to want what on the other end. I am getting better with this. I can now start to make phone calls of my own and arrange my own appointments so I can claim some sort of independence back. I write down my greeting and whatever questions I need to ask with words to use to construct sentences and possible topics or questions that may be asked. I know, it is a lot of effort just to make a simple phone call but it is an everyday occurrence we need to be prepared for.
I guess having a normal global intellectual function, an above average IQ, the ability to retain copious amounts of information, the ability to spell correctly, juggle multiple jobs and situations and to be known among friend for your witty repartee then having it all fade away is something worth noting. It should be important to note this because if you have a friend of someone like this and expect them to be who they used to be and not making allowances for them, you can do a lot of damage. People with cognitive impairments are fully aware of it. They don’t need you to point it out to them or make it more difficult for them. I know I have found that the best help a friend or family can give me is hosting the conversation and helping me by giving me a cue of some sort then giving me time to assemble their thoughts so I can contribute to the conversation and not overtax myself or make me feel self conscious but there is always a few that sneak around the edges of your protective barrier and unknowingly cause you grief and panick attacks.
I really am grateful for my life and all that I have been through has made me a better person, especially gaining insight into what it has been like for those who have always had cognitive impairments. I hope from time to time when I come across some useful tips (and I remember them hehe) that I can share them with you. Even if it is a tip as simple as writing down your conversation in advance. I know for whatever reason I find it much much easier to communicate by typing (at times however my flow of conversation can be very disjointed so thanks for your patience) but I have to be careful not to turn into Quasimodo behind my laptop and remember that I do have a very happy home and a happy life that I can live if I keep up the courage and continue to find ways to help myself deal with my darling little brain. I also have Tourette Syndrome added to the mix lol so it does make for interesting results.
If I have offended anyone with my thoughts and words, it is not my intention, I just wish to be honest and find out how others are doing and what they do to help themselves as I would really love to know.
Keep in touch.