When Things Get Busy


One way I have found I have had to function since I first became sick was to actually schedule in rest days into my week. Other people don’t understand this often. They think that if I did something the day before then logically, the next day, I should be restored. But that is not how Chronic Fatigue works. CF works so that you go to sleep but are be never mentally or physically restored. And even restoring yourself to the small levels of energy you have after an event out can take an extra day, even two.
But I have learned how to deal with this. Mostly, I just schedule something every second day and only the odd time do I schedule consecutive days with events.

Lately, I find myself having to squeeze a lot into my days and what I’m doing compared to the average person isn’t that much. Most people are pretty accepting of how I need to function. We can usually both find a day that suits us to meet. But lately, I feel like a crazy person trying to schedule in all the friends I missed seeing over Christmas, blog, start reading for my fiction course, read other books, keep my areas in the house clean, go to appointments, have time for self care, exercise, and schedule in A who is here everyday until the first year of his chef school is done in the next two months or so. Plus, I’m trying to find time to do wedding scrapbooks for a couple friends, not wear myself out, and do all the little things that come up. Maybe this isn’t much to you but for me I’m trying to fit everything I can into like 1/3 of a day because that’s what I can handle.

I use to thrive in a busy environment. And if I couldn’t find something to do I would find something such as the gym, walking the dog, or reading while working full time and going to the gym three days a week. But I loved it and I had boundless amounts of energy to do some things at night and on the weekend. But it’s important that I try not to compete with that person because I’m not her anymore. There has got to be some slowing down btw 23 and 30 anyways. But sometimes I wonder if cramming my days so full was healthy? Maybe it got me to where I am today — chronically fatigued. I’ll never know what truly caused my body to react with such fatigue mentally and physically but there are always little things I wonder if I could have done different. If I could have stopped my synapses on my neurones from misfiring. But I could wonder forever.

For now I just do the best I can and take delight over the little things like my new knee high leather boots that came in today finally. They fit perfectly. Or I value that I will see my friend on Thursday. We’re busy so there’s been time in-between but every time were apart when we see each other again it’s the same as it’s always been — giggles and laughter. Plus, I’m excited for a Writing 201 poetry course. Anyone else taking this? Sign up please it will be fun.

So as busy as I am for me, it’s important to take the time to relax and build up strength because that gets me through the day. Not to mention, having a plethora of things to look forward to. There is only 5 months to Las Vegas that is something in itself.

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A Tale of Best and Worst Times


Prompt:

“It was the best of times, it was the worst of times” – Dickens, A Tale of Two Cities

When was the last time this quote accurately described your life?

It’s hard to pinpoint exactly when this statement was true for me. There are a few times in my life when I could describe times as being both the best and worst but I believe the most recent time has been the last six years of my life as a whole.

These six years have been the worst of times because I have been battling with a depressive mood disorder and likely Chronic Fatigue Syndrome. The way these diseases have limited my life seem unbelievable to me. I had to give up driving because I cannot pay attention very well and do not have the reflexes I once did. Someday I hope I can just drive to the grocery store or Shoppers Drug Mart and back but that someday isn’t right now.

I use to be an extremely social person and was very close to my friends. Now I feel because of my disease that gap has widened. Partly because I can attend so few events. Night is a difficult time for me so I often can’t go out that late and transportation and money are always an issue because I often do not have money to take a cab both ways or to bus because of energy. I can bus one way in the day usually but I’m just less alert and more fatigued during the night.

Chronic fatigue has also made it impossible for me to exercise at a level where I can lose weight put on from medications and inactivity. I love exercise, I have for a very long time but my body wears out quickly even during 20 minutes of yoga and cardio usually just makes me sick to my stomach and completely wears me out for the rest of the day, especially lately. It is a symptom of CF Syndrome.

Another big issue is that I can usually only concentrate for a couple hours at a time and when I go out I use to be able to do about 4-5 hours but now 3 is all I can handle. Then I go home so exhausted I have to crawl into bed and just sleep for hours, sometimes days. I have malais, which means after a big activity I require often a day or two of recovery time.

Those are the worst of times for me but despite my illness there have been some good times as well. There have been vacations with my Mom and Dad and/or brother to Las Vegas, Anaheim, Phoenix, and Montreal. All of which, despite becoming exhausted by mid-afternoon I have enjoyed so much and have fought to rest up in time at night for dinner and shows.

I have found out who my real friends are because they are the one’s who have stuck by me through thick and through thin. They were there to visit me in the hospital when I was first sick and they are here now with a ride, to share some coffee or wine with, and to invite me out and hang out when we have the time in our busy lives. They understand I need time to rest and cannot make it to every event and they can tell when I have had enough when I’m out with them.

I met my boyfriend A through a dating website called Plenty of Fish. Our first date we went for coffee at the 2nd Cup and went to the movie 21 Jump Street downtown. He has been my guy since and despite the fact we fight and get really mad at each other at times we have been together over three years. At first I was too sick for the first three years of my illness to consider boyfriends but when the time came that I was interested in guys again, he was there.

I have become so much closer to my family both my parents and brothers, and my grandparents, godparents, and extended family. I have learnt that I can rely on them and that we can take care of each other. I have rediscovered religion and the place that has in my life. My illness began with a psychotic episode in which I was so afraid I was separated from God and experiencing Hell. So, I’m grateful to be able to say I truly believe in God and his son Jesus and have no desire to be a part from them but to share them with others who want that. I have learnt not to be so selfish but to talk to others whether they are strangers who just need a smile or friends who I have not seen in ages.

This is why the past 6 years have been the best years of my life. And I think If I’m truthful, the best of times would not be the best without having those bad times.

Writing 101 – A Loss Of One’s Self


20140625-224220-81740472.jpgHow would you describe yourself to the people around you? Would you give a physical description, talk about the things you are good at, and describe your internal qualities? What if suddenly, the idea of who you thought yourself was, disappeared and what you were left with was some broken version of yourself, a shadow that you didn’t know and you weren’t sure how you had become the way you were.

That’s how it felt for me when I became very ill at the age of 23 years. It began with some very bad days in the office, days I could barely get through because I just didn’t have the energy. I would leave the gym at the end of the day dragging my feet and barely able to make it home on the bus. Then I began to cry, little things would bother me and I couldn’t concentrate on work just as I used to be able to do. Then something even stranger happened people began to say extremely rude comments to me almost as an after thought. They would tell me whatever they had to tel tell me ‘ Photocopy this for me…” then something very mean. This was particularly the case with certain people. Then I had trouble sleeping, I would lie awake all night, I began to lose weight, and I didn’t feel much like eating.

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http://www.eastsidefriendsofseniors.com

What I didn’t understand then, was that this was the beginning of a psychotic episode. To this day my doctors and I don’t know why I had it but I have never quite healed from it. Everything became so bad that I couldn’t work, I had a break down. Then I would sit at home and the thoughts in my head would go round and round and I began to hear more voices not just after comments people made to me but from the Television or Radio, from my dog. When these thoughts became nearly suicidal, I went into hospital at the Royal Alex and it was awful being there and hearing things. But one day my doctor started giving me this anti-psychotic drug called Invega and the voices stopped. What remained after my psychosis had passed was the shell of a person. A person it took me at least 3 years to get back and still even today I realize I will never be the same person I was before my unexplained psychosis.

After the psychosis followed a mini-depression. I could barely read after that and I had so much trouble filling out the application for long-term disability because my writing was very shaky and looked more like a grade 4 student’s writing then someone who had recently gotten their BA in English with a 3.7 average.

I was slow to heal. At first I could only go out for 1/2 hour before returning home exhausted. I still needed to sleep a great deal of the day and I had the sharpest burning pain in my shoulders and neck. I felt entirely lost. The conversation of my friends was too fast for me. I couldn’t go to 3/4 of the events we had planned because I didn’t have the energy. I had gone from 160lbs, a healthy weight for me, to 143 lbs, I weight I hadn’t weighed since I was 15 years old and as skinny as you could get. Soon the effects of the medication set in and my weight sky rocketed to 175 lbs. I was uncomfortable in my new fatter body and I didn’t like it. I did not have the energy to do exercise or barely more than a walk or a Pilates 20 minute DVD.

And to tell you the truth, somethings I have just never recovered from. It is 6 years later and I still have trouble concentrating and paying

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http://www.telegraph.co.uk

attention. I have days where I can get much done and days where I can’t get anything done. My doctor’s and I are pretty sure I developed Chronic Fatigue Syndrome after the Psychosis and I have dealt with that constantly. The other possibility is since we have most likely determined my psychosis occurred because I was so depressed, is that I have chronic fatigue from depression. But most signs point to the syndrome.

In these past years I have seem my friends develop careers, make many new friends, and start families. In many ways I feel left behind, that my path changed course and I don’t know why. And I don’t why what I have won’t heal. For me this is the biggest personal sense of loss I have felt in a long time because it as if somewhere in these past 6 years, I have lost myself, my dreams, my goals, and I’m not sure what the future holds. I just take things days by day because that’s how I can get through it.

Catching Up


Hey everyone! I know my blogging has been sparse lately, sorry about that. I have had a real decline in my health this summer and it’s been difficult to concentrate on activities such as writing and brainstorming  blog ideas.

I’ve been extremely fatigued and tired. For 2 weeks I think I just about spent most of my time sleeping. Maybe, I was sick, I think, as illness seems to hit me harder with whatever larger illness I have. Although, sleeping 24-7 has passed I still find my health declining to a place it was at about 2-years after my first episode.

I managed to enjoy my birthday “month” and this past week hasn’t been an exception despite extreme fatigue. I had a lovely dinner with the ladies at Earls Tin Palace last Tuesday and thank goodness it was $4 Bellini night because I needed alcohol. It was great to see everyone who came even though I couldn’t be involved in the conversation as much as I wanted to be.

I’m sure no one noticed but I notice these things and hope that soon I will be able to be more chatty again and less tired. By 9:30 pm I was so so sleepy and by 10:15 pm I just had to leave and take a cab home. It was fine with my friends but I felt sick the cab ride home until I went to sleep. As I often do when I’m fatigued-out, I get flu-like symptoms that go away when I become rested. It’s something I always had but am just recognizing what it is now. I think I have days that are just bad days that I feel like I have the flu but really I’m just so utterly fatigued I feel ill.

But thanks everyone who came out I really did have a great time despite my symptoms. I was so happy to see you all there and hear all about your lives, especially those of you who are travelling to fun places and having or have had kids recently in your lives.

I was also very blessed to have a ride to a friend’s Wedding shower that Sunday via Tara. And the shower was great. A beautiful bride got to be around all her best girl friends, bridesmaids, and women relatives and she seemed to enjoy herself immensely. The weather was perfect and I felt good that day ( which hasn’t been happening so much) and everyone was so nice. The bride received many nice gifts, particularly kitchen based. I decided to go with a couple sets of dishware for the shower and the wedding, the bride picked out a beautiful light blue color for her dishware. It is the same color I would have chosen. 25-years from now everyone will know when our dishes from because we all like light blue dishes.

I can’t wait for the stagette night and only hope I feel as good for that night as night’s have been particularly tough me at times. I more worried about lasting the entire night so I think I will arrive around 5;30 pm for a couple left over jello shots and the comedian and probably take off a bit earlier then everyone else from Cook County on Whyte Ave. I am so excited to go to a country bar it has been so long and my 2-stepping is probably worse than it ever was but I might be able to figure out some of the line dancing again.

Moreover, I am finally going to see my psychiatrist tomorrow. I have to tell her all about how much worse I’ve felt this summer and get her to look into Chronic Fatigue as a definitive diagnosis for what I have. Basically, Chronic Fatigue is going to sleep and never ever waking up feeling rested. There are different degrees of Chronic fatigue and I received the definitive diagnosis definition and charts/symptoms for Canada from the M.E. Society of Edmonton. I now have to take this information, along with filled out charts/symptoms (why I think I have CF) to my doctor. I printed out a list of Doctors that deal with CF in Edmonton, but I’m hoping my psychiatrist who knows my situation best can diagnose me.

If I actually have CF I’ll tell you all about it and how my individual symptoms fit in. I don’t know that this makes treatment any easier but it does tell you that yes there is something physically wrong with me that I can tell people and use for health disability status/AISH etc. I’m positive I fit the criterion, or else I don’t know what disease I fit and it could open new possibilities I haven’t thought of. Possibility can be a great thing sometimes.

— 2 days later — I have visited my psychiatrist and presented my research. Apparently, CF is very difficult to diagnose because of all the other illnesses you have to rule out first. I feel we have ruled out plenty of illnesses but my psychiatrist sent me for some blood work and she is going to send me to a rheumatologist who specifically deals with CF and Fibermielga — 2 similar diseases. It might be a whole year before I see him but I am very excited to start the process and finally get a real diagnosis on what I have dealt with fatigue wise. I may have initially had a psychotic episode caused by depression but sometimes illnesses can result in other illness such as CF. You can get better from CF but you also cannot. I hope that the fact that I was young when the fatigue first hit me (23-years-old) means that might be possible someday or that there is some treatment being developed out there that can someday help me. Although CF has been written about since the early 1400’s the medical community has only recently begun to deal with it and try to come up with ways to help patients.