For many years now I have struggled with memory problems and it became a long standing joke between my friends (and loved ones) and I. I always attributed it to either being too busy, too distracted or being overwhelmed, maybe all three, but in recent years it has increased considerably.
Back then I did whatever I could to try and help by prompting myself with notes, reminders, alarms and whatever else I could to overcome my memory issues. I was pretty good at developing work arounds and it was only under certain circumstances that memory issues became torturous, as was defiantly the case during university examinations. During times like these when memory and recall had to be accessed without delay or assistance those times became particularly disastrous!
However I continued to develop little aids like calling everyone I knew angel so I didn’t have to recall names or look embarrassed when I confused a persons name. I also wrote notes to myself all the time and even wrote on my hands for important events or reminders.
In the past several years my brain fog has accelerated to a humiliating level and it saddens me deeply to admit to many of the things I am about to admit to, but I also hope it will serve a greater good and perhaps even help others in a similar situations.
These days I have very limited recall and have forgotten so many of the simplest of things including my own middle name. These days I struggle to recall birthdays, anniversaries, addresses, names and phone numbers and most recently I left a pot on the stove until it burned dry and set off all the fire alarms in the house, even after all this I proceeded to blame my husband for causing it as I had no memory of cooking at all. It is even more embarrassing to admit that I was simply boiling eggs and this should have been a three minute procedure. Three minutes is often long enough for me to forget entirely what I am doing.
I regularly forget to take medications or even the name of my medications. I forget text messages and to answer emails or phone calls. I enter rooms only to forget why I am in the room and this will happen all day, every day.
Most sadly for me is that I have forgotten how to spell, what words to use and the meaning of words. Without spell check I would never be able to blog but even spell check has limitations (ie. Their, there etc). All my life I have loved to read and write but it is a Herculean task now and my husband has started reading for me and to me. I also use audio books which is an absolute godsend.
I have forgotten to undress when I showered and I have struggled to remember how to turn the television on. Sometimes talking to someone for any length of time will often mean I have forgotten what I called for and what I am talking about so I usually let the other person speak or write down why I called. I also regularly forget what I was saying mid sentence and I will often have to make several attempts to tell my husband something… Thankfully he is a patient man.
My husband has been tortured for years now by me constantly asking him the same questions over and over and initially he thought I was deliberately being rude or difficult but as it become obvious that I genuinely had no memory of asking him he has settled to a new level of patience that I can only imagine is close to remarkable! I now begin a sentence by saying I don’t know if I have asked this… and he smiles kindly and answers me over and over again only for me to return at a later date.
Some words are just too hard for me to remember now and I will agonize over them. Words like wheelbarrow, microwave and shovel will leave me speechless when I need to say something. I will look desperately at things trying to recall their name until my husband will just work out, through a process of elimination, what I am talking about. If days are particularly bad I will avoid talking altogether and simply float without much interaction.
I have even forgotten the names of my darling furry companions and that is deeply sad to me.
Often times now I will forget what I am talking about half way through the sentence and this was bought painfully into view when I forgot that my pet had gotten outside and when I went to tell my husband of the event I promptly forgot what I was intending to tell him and made a coffee instead… it is incredibly heartbreaking at times.
For someone like myself who has always prided myself on my mind, my abilities to reason and to solve problems this part of my life and my disease progression is completely humiliating to me. I feel completely forsaken by the one part of my body I cherish the most; my brain.
I once described my experiences of thinking and remembering like being heavily sedated or stoned. It’s like being half asleep or having your head filled with smoke and wool. Reaching for words or information is like reaching into a thick mist only to pull out nothing in your hand. It is truly heart wrenching at the same time.
The more I try to concentrate the less it seems to help and I often have to admit defeat and wait until a memory returns in its own time, if it ever does. Even some of the most lovely memories and things I would dearly like to remember evade me and I now rely on my husband for this information. Things like when I first met my husband and remembering things we have done together have been buried somewhere in the recesses of my mind like lost treasures.
My husband is now my legal guardian and has all financial and medical guardianship for me as we don’t know how much more things may progress. Clearly some days are better than others but some days are truly desperate.
My room is covered in notes I have written for myself, my phone is filled with reminders and alarms, and I constantly find half written blogs which I have started and then forgotten about. I found twenty five at one time and resolved that I should try and finish them one day. I will certainly try.
Writing each blog will take several days even months and I am not a fan of marathon writing sprees as I will forget more than I mean to write. Even simple online chats will see me put down my phone or computer to get a drink and then I will promptly forget to resume the conversation!
To try to remedy some of these debilitating symptoms I make myself take supplements to help increase my mental abilities and alertness, I play word games to encourage spelling and word recognition, I do puzzles, I drink caffeine, I meditate, I use essential oil and I am very cautious with my use of pain medications and muscle relaxants so my brain fog is not compounded.
Decreased cognitive skills are symptoms that I find most painful and cruel as it cuts to the very core of who I am and how I have based my life. Cognitive skills are not small things and can be brutally underrated by the medical profession because it doesn’t affect them and they have no idea about how it can impact our lives.
I would have loved to do some sort of studies during the time since I have been retired but brain fog is a big factor (one of many) that affects my abilities to do so. To add insult to injury I have a real need for happy memories during my darkest times and yet I struggle to remember some of the most precious times that I want to recall, it is due to this fact that my darling husband and I have developed a beautiful interaction where I will request a happy thought or happy memory from him and he will retell it to me and we will share them again. Sometimes I will remember them with him and fill in some details myself but sometimes I can’t. This has become a treasured pastime for us both and I am deeply grateful for his memory and love when I need it most.
As a young person I once dreamed of writing a book as many people no doubt do and it saddens me deeply that I may never achieve this goal due to some inability of my memory or mind but like everything else with autoimmune diseases I can’t let myself give up and I must just be prepared to battle along and do whatever I can.
After all some of the most treasured things we have are our memories.