Alone

                                                     

     

      Well another month has gone by. When you know about how much you have in front of you, you cherish every moment. I often feel I have so much to do that there are not enough hours in the day. When you have a disease like MSA every second counts.

    Fortunately for us I have a very large family, who I get along with. They are always coming to see us, or phoning to see how we are managing, or me going there.  We have lots of friends some new and some old. Some I met because of MSA, some that I had before MSA and some we lost because of MSA.

     One of my nieces stopped by to visit. This is the second time she was able to come for the night.  We had a nice walk and talk. I was able to reintroduce her to a mutual friend whom I see on a regular basis.  

  I showed her one of my favourite spots to sit. So with wheel chair and her and I, went to the courtyard and sat. We do live in a beautiful area. This courtyard has two churches here and a lovely garden, which Hunny was able to catch on camera. This niece is not much younger and we have always been close.  I see the sadness in her eyes when she sees how the MSA is taking over and I know she is being strong not only for her but especially me!

     We have friends we met on one our postings in 1996 and we are still friends today.  Whenever they are in town they make sure to see us.   She also phones regularly.  I know how hard it is to see me having trouble getting around and since I saw them it was without a catheter.

     Can you imagine not only finding out you have a rare disease like MSA, which has no cure, but it also feels like you are slowly loosing control of not only your body bit by bit but also your relationships. Some of the stories I have heard and seen have left me disheartened. When people need their love one’s most they seem to have abandoned them.  

      

     They say this is a lonely disease but thankfully my circumstances are different, because of family and friends l will never have to worry about bring alone!

People that Cross Our Paths

     Did you ever wonder why people  cross our path?  Before MSA I did not realize importance of this, at least not in the same way. There have been friends that have come and gone,and some because of my sickness. Some times you have that special friendship where years go by and you can pick up where you left off.  I am going to share a story which will validate my point. 

     We were posted to Alaska for four years. There was a family we became close to. We would go camping and fishing with this family. Then one summer it was also posting season and both our families were sent to Angus,luckily.  Since our kids got along so well and us parents got along , I said I would babysit while the parents worked.  Our families spent a lot of time together . Then three years later we parted ways because of postings.  When our son first went to Royal Military College, Kingston it made us feel good knowing they were there.   This made me feel good that our boy knew someone there, we dropped in to see them. This was before I was diagnosed with MSA. We shared some stories and fond memories.

   





      Again our son got posted as they did, so we went our separate ways. Our son recently got posted to Kingston and bought a home.  We learned one street over this family lives and when their son graduates also wants go to RMC.  For our son who is completing his Masters at RMC, and he will teach for three years.  So once I babysat this young boy and now my son will probably teach this youngster at RMC.

     This next story is  to remind us of that our Guardian Angels are all around but just need to pause and look closer and just do not pass it off to coincidence.  

     One time while working downtown, for about a week I saw this woman on crutches and with one leg.  This of course would make me think of my own mother who has passed on. My mother had one leg and churches but it is so odd to see now of days. My mother had also 13 children with one leg, crutches and no running water. Even though she had a hard life, there is something very important my mom taught us. To be resourceful, resilient and never give up.  My mother would say no matter how tough things were going to be, rely on the people who love you and dry your tears and continue on, seeing this woman reminded me of my mom but thinking of my mom made me remember this, which I often tap into with MSA.

 We have to remember people and thoughts of people enter our lives for different reasons. Sometimes it is to teach us but sometimes it is to teach them!

The Move

       Hunny took a week off to break up summer but also for us to have some time together.We took lots of walks, went for coffees. We could not go very far because, I have been having a lot of bladder problems. It is one of the major symptoms of MSA, not emptying the bladder. I have had eight or nine infections, so that means they want me to see an urologist.

       I was pretty upset because try as I might to change things, MSA had different plans for me. We went to see Dr. Roberts about the bladder issue. He recommended a catheter, which shouldn’t surprise me, because most MSA patients have one. But I cried anyway! Little by little I was loosing control of me, and there is nothing I can do. I cried for me, for our children, but most importantly about us!

      Of course I will not let my kids see this side or that I feel like an alien, or my friends for that matter. I will be as brave as I can.

       It seems our boy found a house that he liked, so he will go to Kingston to put an offer. What a great experience for him. The negotiating I never did like, but I still think it is another life lesson he will learn before MSA takes over my life. This offer he put oh the house fell through but he was lucky and found another house. So he took this experience and applied it to the offer he was about to put forward. He got the house!

 

    
      We drove to Kingston because I wanted to see the neighborhood our son would be living in. We took a walk around so we could visualize the place and also too see his house; well at least on the outside because the house was empty. 

     We went back when he moved in, and took lots of pictures and opened a bottle of champagne. We celebrated that our boy had his first home. The pride he had showing his parents his house.

It is quite possible with the MSA I might not be here for the next move.

The Posting

   

     It seems our boy is getting posted.  We have lots of experience in this area, but never any family close by to share the excitement with or the feeling of being in limbo. You don’t belong in the new place yet, and of course you don’t belong in the old place either. Luckily he will be only going 2 hours from here and lots of family so he doesn’t need to experience these feelings. He was chosen to return to Royal Military College (RMC) to complete his masters. We were all very excited for him.

     Not sure if you know, but when you are in military quarters and you are posted there is a certain procedure. The movers come and do an evaluation of how many pounds you have, you have to get all your electronics certified that they are all in working condition or they won’t insure them. They will come and pack and move all your belongings. After they move your stuff usually you clean then they come and inspect. We are all very fortunate that we can help with this.

Even though I will be stuck in a wheel chair because of the MSA, I believe it is beneficial to our son and us.  We are fortunate that he still asks for our help and he knows no matter what the circumstance, we will be there for him and his sister.

             

We went over and while I sat in my wheel chair, Hunny and our son went room to room to fill holes, remove curtain screws and picture frame screws and wash walls. We made the best of it and had a good day.

             

Also when you get posted the military sends you on a House Hunting Trip for five days. My daughter and her husband came to Mommy-sit me (I wrote about this in a previous blog: The Mommy-sitters). I also  knew because of the MSA affecting me and  stairs, this would be challenging and slow my husband and son down, so I told them I wanted to stay home. This broke my heart because if our son found a place I would not get to see that look and his first house, the layout or what the subdivision looked like. Another experience MSA got to rob me from, seems there are a few of these.

The Mommy-sitters did a good job with distracting me, and taking care of me. My daughter knows how important all these milestones are to me, and not letting the MSA keep me down. It would be easy to give up and be angry and I would be justified, but I figure who would want to be around me and my family and friends are too important not to take the higher road. Thankfully my daughter and her husband are staying here in Ottawa. They will continue help taking care of me. 

    

          They looked at lots of houses in our son’s price range. How old they were, what needed to be done and when, what had been done, how far they were to work, and what amities were close by.  When they returned our son told me of all the houses he looked at, what did interest him and why.

        Now, that he found a place he likes, the real fun begins the negotiating!