Able to Love

In the 13 months since I've lived in a care home my level of ability has decreased rather dramatically. I stubbornly still try to do things myself but there are days I'm so exhausted I just let my care aides help with things I should be able to do. On those days, I feel ashamed of myself for accepting help I really didn't need. Then I beat myself up for that. I spiral and tell myself I'm useless and I'm worthless and I'm just a burden. I always know that those are lies but I've always been hard on myself and this is what I do. Eventually I get sick of feeling that way and pick myself back up.

I remember that the one thing that this stupid disease can't take away from me is my ability to love. I have family and friends that I love so fiercely. I'm so happy when I remember that. 

I am now struggling to transfer in and out of cars. That just started a couple months ago. Well, that's not true. I've struggled for a while. Now it's almost impossible. So now Kristianne is thinking of selling the car to get a crossover or small SUV. That will extend the amount of time I can have her drive me places. So while I'm proud that I've raised a daughter that considers me in a decision like that, I feel bad because I know she actually really wants a small car but tries to accommodate and include me. She loves me. Now I can't have friends just pick me up to go out spontaneously. I've always been quite spontaneous so this is a very hard thing to get used to. But I will, eventually. My friends are very understanding and just adjust plans and come visit me instead. They love me. 

I feel like I complain a lot. I don't mean to, but I feel the need to explain myself all the time. So I'm really not complaining, just explaining. 

I am able to entertain friends. I volunteer here at the home with as much as I can. I am a Resident Advisor on the Long Term Care Advisory Council and that has led to me having so many opportunities I never would have had. I am able to watch my great nieces for a few hours at a time and love that! Most of all, I'm able to love!! 

Dreams Come True

When I found out I was going to be a mom, I was scared to death. I was quite sure I would do everything wrong. As his due date came closer, I felt so much love; I knew he deserved the best of everything. A couple years and a lot of trauma later his baby sister was born. He adored her as much as I did. The two of us bonded even more because of our love for my sweet baby girl. She was so sick for the first year and a half of her life and I felt like a failure as a mom. Then the three of us found ourselves on our own. I was sure I was a terrible mom and that my kids would be taken from me at any moment. They were my whole world, my reason to fight to make a better life. I struggled with my inside terror of losing them. I cried myself to sleep more nights than night. I fought to teach them high moral standards and good manners. I taught them to live the life God would want them to. But still, I was terrified of losing them. I struggled through deep, deep depressions. Then just as life seemed to be getting better, I lost my dad and the best paying job I'd ever had in the same week. I spiraled down into a deeper depression than ever. I pretended to be tough because my mom and my kids needed me. I could barely function, and could not stand to be alone. Again, life got better. I got my dream job. Payroll and bookkeeping at a popular greenhouse. My bosses were amazing. They allowed me to work around my kids' schedules. I had never felt so respected in my job as I did there. And again my world crumbled. I woke up one day unable to walk on my own. I went to the hospital and after several days of testing I was told I have MS. I was put in the rehab ward for a month and learned to walk again. My mom stayed with my kids all that time and again I felt like the worst mom in the world. I was a complete failure. I couldn't go back to work. I couldn't drive. I was always tired. I felt completely useless. I failed. I wasn't teaching my kids the value of hard work. Finally after a year I got a part time job that barely used my education and talent. But the board was happy with me and it was the best I could do. By this time the kids were teens and because I was always tired I didn't have the energy to go out or to drive them to a lot of places they wanted to go. Because I could only work part time I couldn't buy them the "cool stuff" or take them on the kinds of vacations their friends were going on. I always felt bad. I always felt that I wasn't good enough. I was failing. I failed at getting the career I dreamed of. I was not able to give the kids the life I wanted them to have. Nothing was going as planned. But I consoled myself that I loved them, and they loved me. It wasn't enough. I still didn't feel like I had worked hard enough. Then just before he turned 17, Aaron moved in with his father. For three months we had no communication and no definite confirmation that he was actually there. I was heartbroken, devastated, worried and scared out of my mind. My kids had always been so close so I was terrified that Kristianne would follow him. Instead, their bond was weakened. That upset me too, and there was nothing I could do to help my sweet little princess to deal with all the things that came with that. I finally felt ready to take on a full time job. I took it, and it was a terrible mistake! My boss would switch from building me up as the best employee she'd ever had to threatening to fire me and back again so fast I'd get whiplash trying to keep up with her. Because of her, I was so stressed and depressed that I had to leave work. My doctor insisted on a medical retirement. Again the bottom fell out of my world. My relationship with Kristianne was becoming so strained and no matter what I did...she was a teenager. Moms are wrong. Moms are out to ruin the fun. Moms never ever want kids to do anything. Moms always just take advantage of their kids. Oh we struggled. We fought. I cried my eyes out. My son didn't want anything to do with us except a few hours on holidays. My daughter hated me and resisted everything I tried to do. We had terrible communication. She thought I wanted to take advantage of her and to hurt her. She had a circle of friends who encouraged that way of thinking. It hurt me to the core. Then I got sicker and needed more help. Then I went blind in one eye. I was so scared! Scared beyond anything I could describe. I hid in my room because I was embarrassed by my eye patch. My balance suffered because of my eyes. Then when my vision came back my legs quit. Other basic functions also stopped working. I became bedridden. I required help to get up. So I became a recluse. I was lonely and depressed. Finally I had no choice but to go to the hospital. I abandoned my baby girl. She was supposed to be graduating from grade 12 and I was laying in a hospital bed able to do nothing. I couldn't encourage our help her to write papers or study. I was useless. She has never told me so, but I think she was angry that I left her. She became rebellious and our relationship became more strained again. I could no longer drive. I couldn't even stand long enough to make a Tassimo cup of coffee. I tried so hard to cook and clean from my wheelchair, but I couldn't do much. I was a useless blob. My child had to shop and take care of my home. It was so wrong!
362 days ago I knew something was wrong. I went to the hospital and by the time I got there, I was septic and I was very very seriously ill. I spent 73 days in the hospital. My sweet girl was there for 71 of those days. The sent me home but we both knew I would need care. Our relationship was still not good. We argued about everything. We fought about foolishness. I had never been as unhappy as I was that summer. We got to go on a trip to Vancouver, but things were so strained between us that it was hard to enjoy. I did have some fun, but it all had a shadow over it. Then when we got home, I went septic again. I was back in the hospital again. That was bad enough but they decided I needed to move to a long term care facility. My life felt like it ended. I didn't know what to think or how to feel. I was numb. I don't even know if I was depressed or not. I just felt like everything was surreal. After a 2 month stay at Chez City Hospital, I was moved to Porteous Lodge. Severe depression set in. Most people here are over 80 and make new friends every day. I couldn't bear to see what I see here. I've gotten used to it. I'm even involved in some committees etc in the home. I'm learning to find a new me and a new life. The best part is my relationship with Kristianne is the best it's been in so many years. Aaron has started to call or text "for no reason, just wanna chat". That has me over the moon! We're working to build things back up. Kristianne loves me more than I realized and even brings friends to come play games and hang out! For the first time in life, I feel like I am a good mom and that my kids love me unconditionally! The rest will come with time. But for now, I can say I raised two awesome kids! Completed one life goal!!

Long Time Gone

Wow! I know I'm a procrastinator but I didn't realize it had been so long since I've written. I know that I kept waiting for better things to happen in my life because I didn't want to focus on the negative and there were certainly a lot of negative things. Many of the things that affected me most cannot be shared because it affects other, more private people in my life as well. 

It is still not real that I live in a care home. I keep thinking how much I want to live at home. But I just can't. I know it, but that doesn't change how desperately I want to go back. 

Most of the other people in this home are either mentally ill, elderly, or severely physically disabled. There is one man in a similar condition to me, but he's about 15 years older than me.  I tend to spend my time playing games on my phone, texting whoever answers me and watching way too much TV. I'm not sure how long I'll be able to keep my TV and internet on so I'm enjoying it while I can. 

A few days ago, a very special uncle of mine passed away and I'm struggling to keep myself out of a downward spiral into sadness. I'm focusing on my favourite happy memories of him. He was a wonderful uncle and I loved him so much. 

That same, very sad day, my niece gave birth to my 9th great niece!! I can't wait to meet her. One of the greatest joys in my life is being an auntie/great auntie! 

This is a fairly short post but I'm hoping to start writing more often. It's a great way to keep my thoughts and memories all together. 

June 3

My energy levels are up most days but I'm still not strong enough to do much. It's very frustrating. Of course, I'm afraid to do much when I'm home alone, but by the time Kristi gets home I am wearing down...and she has homework and is tired too. There's nothing we can do about that. I'll adjust.
I've been trying to walk more, but I'm so wobbly that I can't carry most things (when I walk to get a drink the cup is nearly empty by the time I get from the kitchen to the couch!) so then it's simpler and faster (and cleaner!) to use my chair. It's a vicious cycle.
I'm so happy to have more energy for now. I'm happy that I'm brave enough to try to walk. I'm just not very patient and I don't like others to do things for me so I won't be completely happy until I'm independent again.
On the up side I was able to load the dishwasher, sweep the floor and vacuumed the living room! I'm always excited when I have the energy to at least do that!
A few months ago if I did all that I needed to lay down and have Kristi take care of me for the rest of the day. One of these days I'll be able to do that much...and clean the rest of the house! But for now, this is an improvement!
It's going to get better...I'm going to get stronger!!!

Finally...

I honestly intended to keep up with my blogging. It's a healthy outlet and I find it very fulfilling to write about what's happening in my life. Then life got tough. I wasn't ready to share what was really happening; what I was really struggling with. I became very depressed but I was in denial. I pretended everything was fine. It wasn't. I'm not going to go into details because other people are a part of my struggles and they don't necessarily want their part in it published.
I have been working very hard to try to clean the house, but I can only do half of what needs to be done from my chair. Doing half a job every day results in the house getting out of control after a while. So I got frustrated and added that to my struggles.
Recently I asked a dear friend who has a cleaning business to come and help me. I don't think she knows what she's in for, but she's coming tomorrow! She may run away screaming when she sees what needs to be done! It'll be nice to have company and help.
The depression is beginning to lift as things start coming together to allow me more freedom. We are looking at how I can begin to drive now that I have hand controls. I just need to get stronger so I can use the walker more and/or figure out a way to get my chair in the car. It's still frustrating as lots of public places say they are accessible, but aren't. They don't get that slapping a sticker in their window does not make it easy for me to get through a narrow entrance, up a slope or over a cement block. Being disabled is far more...I don't know...it's just harder than I ever imagined!
I know I'm a strong person. I can deal with most of it. But everyone has a breaking point. I'm trying to prevent breakage!
On the up side, I've been helping Kristi by proofreading the ridiculous number of essays she has to write for her English classes. The nerd in me loves doing this and it's part of what brought me back to my blog! She's doing so well in school and will pass these last two classes with flying colours!
She got her grad photos done and I cried when I saw them! With all the struggles, failures and delays, this kid fought through and did it! We did it!! She's graduating!! I've never been so proud in my life!! It's so exciting!

Not always sure who I am

Getting Ready for Christmas

My kids and I have several Christmas traditions from their childhood. We have some very old decorations on the tree that we got for our very first Christmas as a family of three. They are so important to both Kristi and I. I've always let my kids choose ornaments and decorate the house any way they see fit. We have Christmas lights bordering our entire living room ceiling! I actually love it! It creates a warm and cozy ambience. The pole that was installed to assist me in walking up the stairs has red & white garland so it looks like a big candy cane! We have all the presents wrapped and under the tree, except that I am going shopping in a couple days for Kristi's gift, and she's going shopping for mine soon. We've also painted some ceramic ornaments together this year. It was so much fun and renewed my interest in crafts and creativity!
Now, I've talked before about my relapse that has lasted more than 10 months so far. I've learned to live with new normals and adapt things to my limited abilities. I'm determined to get back to my old normals as much as possible. I often do household chores, but there are some things I just can't do yet. One of the things I have had to do was I had to sit on the seat of my walker when I brushed my teeth since last February. Last night I went into the bathroom just to put something away in the cabinet and decided to brush my teeth right then rather than later. I was just standing there brushing my teeth when I caught a glimpse of myself in the mirror. It hit me...I was standing up the entire time I brushed my teeth! I did it!!! Without sitting down!! I didn't even think about it! By the time I was almost done I was pretty wobbly and was hanging on to the counter, but I did it! It might seem small and silly to some of you, but it was a huge deal to me! It's one more small step toward my old normals! I can't wait to tell my therapist! She'll be so happy to see another step toward independence!!
I'm off to do more stretches and think of more ways I'd like to develop my creative side!

Jumbled Thoughts...

Well, I was determined to write every day or at least every other day! That already didn't happen! I'm great at procrastinating! I keep thinking I'll do it later...so later is finally here!
I have tried to write a few other posts but got so emotional that I just couldn't share them!
Our family has lost 3 loved ones since August. Two were cousins that left us far too soon. The first was a younger cousin, who fought his cancer valiantly, but God had a plan we will never understand. He was a loving son to my auntie and uncle, and a loving daddy and husband. I am close to his sister and I know she misses him terribly. I hurt for her!
The latest was my cousin Wes, who I had always wished was my big brother! He was so sweet and always played with me and took me under his wing at family gatherings! I always looked up to him! I wished I could draw like he did when we were children. I am a talented writer, but, unlike Wes, I've always been too shy to share it.
This past summer I was in the hospital. Wes came to visit me often, even though he was in so much pain. I could see him struggling to sit in the chair next to my bed, but he faithfully came and cheered me up. We talked about the years we missed in between our childhood and our reunion. I showed him things I'd written. He wanted me to tell some stories, and promised to help me and possibly even co-write one particular story. He was so brave, so strong, so encouraging! He very quickly worked his way back up to being my idol. Anytime I texted him complaining of pain or frustration he would encourage me and promise to be back to visit soon. He could make me laugh within a minute of arriving in my room! Now when I see anything pertaining to his favourite superheroes or Star Wars, I have to fight tears. Those were the things that he loved so much.
I am fighting for my health and independence now. I'm struggling with the loss of two cousins and concern for their parents, my dear aunts and uncles. My mom supports and encourages me daily.
I wanted to write a tribute to Wes but I can't. I just get too emotional. But every time I work on a story, or attempt to write a blog, that is a tribute to him. And I will get the story done that he wants me to tell. And I know that he will be watching and he'll be proud of me.

It's a Good Day!!!

I didn't write yesterday because I was not having the best day and was trying to do some cleaning. I wasn't very successful, but last night, I vacuumed my front entrance and living room. That's not an easy feat with a canister style Electrolux and a wheelchair. But I did it! I'm so proud of myself. My therapists tell me not to do it due to my MS fatigue, but being forced into retirement at 42 means I can get awfully bored! People who know me would know that I'm really, really bored when I get excited about vacuuming!
Today I got up and loaded the dishwasher and made my breakfast! It's an amazing feeling to be able to do some of the things a regular person does! It's been about a year, maybe more, that I couldn't do all of this in one day! And before I went to the hospital, making my own breakfast and loading the dishwasher would have been all I did in a day! I would need a nap and just rest the remainder of the day. Of course, before my relapse I didn't have a wheelchair. I do all my housework in my chair now, so I only do things I can reach in my chair.
I had therapy this afternoon.My friend drove me and had to drop me off early. I decided to kill time by going to the ward and visiting my rehab nurses. It feels so good when they come and give me big hugs! A couple of them rushed over and hugged me and said they were so sorry to hear about the loss of Wes! That's sweet in itself, but the fact that they remembered that he and I are cousins and his visits! It meant a lot to me! I will write more about him another day, because I know that I need to share about how he helped and encouraged me! Then it was time to go to my "torture session" as I affectionately refer to therapy! I told my therapist that my surgery (two weeks ago) had really worn me down and I didn't feel like I could accomplish much. She agreed to just do what I feel up to. I walked 120 meters, with two small breaks. I then did a few leg stretches and that's about it. She said she was really proud of me because she was watching my face and could see the effort it took and I was fighting and working very hard but didn't quit. It made me feel very good that she could tell that I did my best because I certainly have done more work than that in therapy. I'll get back up to my old levels again!
And now the big news!!!!! I got my motor scooter today!!!! I've decided that it's my Harley! I'm a big, bad scooter mama!!!! Tomorrow I'll go out for a ride and see how it feels to go out all on my own for the first time since January 29!!!

Here we go!

I'm going to start with a bit of a background on my current situation. Future posts will likely shed light on more details of some of the events of this year. But 2015 was off to a rough start. On January 29 I went blind in my right eye. It lasted for 32 days. It was the scariest thing I can recall ever happening to me. It is a very normal MS symptom, and most people actually find that it's the first symptom they ever have. I, however, am unique, and I didn't experience it for the first six years of my war with MS. Shortly after I went blind, my ability to walk steadily decreased until I was bedridden. I lost the function of several parts of my body at the same time. On March 21 I started having home care nurses come in to help me twice a day. In the beginning of May they started telling me that I needed to go to the hospital. Knowing that doctors have a responsibility to ensure your safety, I knew that if I went in, they wouldn't allow me to get a day pass for Kristi's grad. Besides, a hospital bracelet wouldn't match the outfit I planned to wear. I fought the nurses every day because nothing was keeping me from my baby girl's grad! The night of her grad, my niece Nikki drove my mom and I to the grad. They had to help me down the stairs. We used my wheelchair at the venue. It was so hard to swallow my pride and be seen on the most important night of her life in a chair.  But I'll do anything for both of my kids, and I'd rather be there in a chair than not be there. I was still of the mindset that the chair somehow made me less of a person. When we got home I was so tired, Nikki and Mom had to help me get out of the car and into the chair. They wheeled me to the outside stairs. I fell. I crawled up them and sat at the front door for a few minutes. I then crawled across the living room where there are 5 more steps up to the level where my bedroom is. I began to cry. There was no way I was getting up those stairs. My night nurse came and recommended we call the fire fighters. They would carry me up to bed. Again, my pride took a huge hit. I had to be carried to bed by firefighters! On the upside a couple of them were cute! :) I again refused to go to the hospital because I did not want Kristi to come home from her grad party to find me at the hospital. I thought that was a bad memory to have! So I laid in bed. She came home Saturday morning and hugged me and ran down to bed, where she slept away most of the day. In the evening I asked her to come to my room. I told her I wanted to spend the evening with her and in the morning we'd call an ambulance to take me to the hospital. On May 17 I was admitted to the hospital, where I stayed for 88 days, until August 12. When I came home the twice a day visits resumed. Then I began outpatient therapy. Then on Oct 22 I had a minor surgery to help with one of my symptoms. Then the nurses started to come only in the morning. Now they only come 2 - 3 times a week to check on my surgical wound. Soon they will only come once every 8 weeks. 
I know I glossed over a lot and focused mostly on Kristi's grad, but that just leaves more to write next time! I am always open to talk about my disease, the treatments and any questions you have! And just so you know...I will not write solely about how the disease affects me so stay tuned for lots of interesting topics! :)