|Me and Soph
My current care giver had asked me if I would answer a few questions for a paper she was writing for one of her classes at Madison. I just realized as I was clearing off my desktop that I had saved my answers. So thought I would share it. Nothing really new but my quick first thoughts as I did this assignment. Also thought very thoughtful of her to do. The photos are the images attached to my friend's or family's cell numbers....figured kind of interesting...
1. Can you describe how your daily life differs now than it did before you were affected with this illness?
My daily life has little to no resemblance of my life prior to this illness. The best way I can describe it is that I “think” about everything before it happens…I cannot remember the last time I just woke up and set about my day. Most days I wake up and my first thought is I am still sick? Then I think about sitting up, think about if I am in my ranch house I can get some juice by myself. The entire day goes like that…it’s very much in slow motion and if I want to go “do” something which may be a doctor appointment or a short trip to a friend or even someone coming to the house it is well planned. And often despite the planning…enough to eat, enough rest, etc…it doesn’t mean it will happen.
My idea of productive now is “did I make it out of the house” or I was able to read a novel without being exhausted or making my own lunch or dinner; which means warming up or taking something someone already made for me out of the refrigerator.
My plans exist very in the “now” there is no way to plan how I will feel hour to hour or day to day.
However, the one thing that hasn’t changed according to my friends and family is who I Am..but I need to be reminded of that constantly…because though I feel the same on the inside my body prevents me from going to or experiencing anything in the same way. I “make” it…about a few times a year I have this amazing day where it all disappears and I feel like I’m living a dream or waking up from a nightmare.
My life before is I got good grades. Went to Boulder, got sick got my tonsils out felt like a million bucks transferred to UWM had a major in Psychology and a minor in African American Studies. Volunteered at Children’s hospital, joined Public Allies of Milwaukee (similar to Americorps) worked in the inner city as an Economic Development Coordinator – did that for 2 years lived on the East side of Milwaukee traveled all over the US and London and France 3 times. Got interested in health and economic status, went to massage therapy school while I went back to school for pre med pre requisites. Had a massage business, lived by myself, went to school – looked at three different Naturopathic Medical Schools – Portland, Seattle and Phoenix again all by myself – not meaning alone…meaning I enjoyed doing things like that. Decided to go to SW College in Phoenix a city I had never been too…and mostly the decision was because it had a quick direct flight back to Milwaukee b/c I had so many friends weddings and visits I wanted to be able to go back and forth for a weekend.
Now my accomplishment is staying sane and happy with this new situation.
2. Upon the diagnosis of your illness, what were some of the major changes that had to take place? (living arrangements, caregiving, etc.)
Like most people with this illness that was the most frustrating part…not getting a diagnosis that wasn’t a psychological diagnosis. I first started feeling not well about the 3rd year into school…even the first two I did notice I could not keep the rigorous schedule. Early mornings school all day and then nonstop studying. I didn’t know then that this was an illness I most likely had since Mono at age 11 that went into long periods of remission. Until my tonsils out at 19 I did not realize how unwell I had felt since that initial mono diagnosis. Eight years ago CFS/ME was still a very isolated illness, now the internet and advocate groups has changed that.
My first bad symptoms came I did about a mile and half walk with a friend of mine for years and I started noticing when we were done I would get in my car and be shaking. And I would go home and just crash. I went to my school’s medical center got retested for mono but my titers weren’t very high and so I just dealt with it…I didn’t tell my friend how sick I felt, then one day we added this canal to our circle walk and all of a sudden I said I cant walk anymore. And since we were isolated there was no way to go get a car so I would walk a few steps and then sit down and we just kept doing that. That was the last time I went for a long walk. I started changing my class schedule, dropped down in hours…I just adapted. Then it just got worse and worse. I had moved to Napa and got a job as a receptionist at a spa and couldn’t do it b/c I could not stand for more than a few minutes. I had not been diagnosed with POTS didn’t even know what it was till 5 years later. (Postural Orthostatic Tachycardia Syndrome…basically your heart works really hard just to stand ) I also had lost a ton of weight-I was struggling to stay above 100lbs – I had every symptom of hyperthyroid but my lab was 1/10th off so the doctor said it couldn’t be that.
I then went to Mayo Clinic and did a million things and my longest visit was with the psychiatrist that said I had suicidal indications – and that I was depressed and anxious…. yes I was depressed and anxious b/c I was really sick and no one was listening to me…no one said “we don’t know”
I went to an endocrinologist at the medical college that asked if I was sure I wasn’t anorexic or bulimic…. after that I was done and had no respect or trust for the MD world – I found my doctor in Phoenix and switched to a completely Naturopathic approach. She never really said “you have Chronic Fatigue” she said you are really really sick and it’s going to take a long time. I had a chronic strep, staph, CMV and EBV infection.
I now live in 2 states b/c my doctor is in Phoenix and I can’t deal with the winters I get too sick. I have a driver or care giver when not in Wisconsin full time. Here at home my parents do a lot and I have help to ease the burden. Nothing is similar. Everything in my life revolves around this illness.
3. What are some stressors that you deal with now that you didn't have to worry about previously?
Biggest stress is who will take care of me. I panic if someone isn’t on speed dial. And financial…my illness is so expensive between alternative treatments / regular medications/ care givers and not earning an income…if my family was not or continued not to be in the financial state we are in I know I would be bed bound and far worse. I am able to have a quality of life b/c of adjustments.
I’m lucky that I am not by nature a depressed person. I get depressed about this illness but that is a very big distinction from someone that suffers from clinical depression and it is important people understand the difference. Clinical depression is a horrible mental health problem but very different than being ill and being sad.
You learn who your real friends are and the biggest thing is my closet friends adapted. And we still laugh and joke and the conversation doesn’t revolve around my illness. I think when the movie The Forgotten Plague came out that was a turning point for me I could say – watch this – I tried I write a blog which does help ease the stress – I leave it on the page but it was still hard for people to believe how sick my day to day was if they only saw me pull it together for an hour.
The biggest stress is lack of independence and privacy – and then you let it go. The book How to Be Sick by Toni Bernhard was also a life saver – bc it was things I was already doing and see that was how others coped helped a lot.
My dog – is an amazing companion. Bird feeders…I’m not much of a nature buff but looking outside helps. In phoenix I have an amazing sunset view – music… Smart TV.
For me social media does not help much –it’s not what I would have found important prior to this illness so it is often just depressing and has me focusing on what others are doing rather than what is in front of me. I can say like with my nieces and nephew whom are huge stress reliefs I can’t take them places or be the aunt I would want but what I can give them is my complete attention – and in this day to day of such a distracted world you would be surprised what a gift that is.
Having people to vent to that don’t put too much into it – realize you have to let it out but then let it go. I focus on what I have not what I don’t have.
5. How much of your stress do you think comes from the fact that you are dealing with an illness that there isn't many answers for? What does this make you wish to see in the future?
The medical community stole years from me and I’m quite angry about that. I know now that I needed to balance my life and large stresses my body couldn’t handle due to how long it took me to recover from my initial mono at 11. Had I known that I would have stopped way before I did with medical school etc. I also blame them for making me feel crazy rather than say I don’t know.
Then you take the internet plus lack of answers can also be a huge stress…there is no one path and you hear one person do so much better from this treatment or that treatment so you can get pretty lost and into a deep hole of trying so many things… Also if a medical community doesn’t believe you then it’s much easier for your peers not to believe you – and give you all these insane ideas to try…b/c so and so got better doing meditation. Yoga, eating organic etc…
Gosh the future…I think the traditional medical education and the system of medicine is so messed up I don’t even know ..I hope for a quicker diagnosis, that the patient is to be the best indicator of this illness…no one drops out of their life, I hope for a few medications that will help….more trials…ways to prevent. I hope this illness can unlock the mystery on other illnesses…most of us are very sensitive to the world around us having an over active immune system for day to day scents, foods etc…and it appears this new generation of children have a lot of allergies…I hope treatments will lean towards supporting rather that suppressing and immune system. I hope I will see it…with the online community, ME Action, the two movies Unrest which is making huge strides internationally at film festivals, and The Forgotten Plague there is progress in awareness and that is a beginning.
(As always thank you for reading. And ugh did best I could with the spacing transferring this from a word file...also there are many more people's cell phone images I could share...and I'm sure grateful for that...)