Introducing myself

Good evening.

I'm Eleyne, and I was diagnosed in 2006 although I'm sure I had MS for years before. I can point to specific incidents that would probably be considered evidence of relapses, and I've always been heat sensitive.

My neuro has recently reclassified me as SPMS, and that change in diagnosis has thrown me more than the initial one. As I 'see' the struggles I have to do things, and realize that it wasn't this difficult a year or so ago, I get a bit depressed and concerned about losing more of my independence.

I'm very blessed to be married to a very supportive guy, and we have 7 children and 6 grandchildren. Almost all of the family lives nearby, too, so we get together fairly regularly. Thankfully, they all 'get' most of my MS symptoms, too.

13 Replies

  • Pleased that you have such a supportive family, grandchildren are such a blessing. The news you have just received is bound to make you feel like you do. All I can suggest is enjoy the good times and when you feel down you have some good memories to dwell on, which will give you the strength to keep going. God bless Jimeka

  • Thanks, jimeka.

  • Recently there's debate about RRMS vs SPMS. Look (Google) the Swimming Pool theory M S (not a joke). It depicts a RRMS that is progressive all along. Not sure that makes me (you) feel better but it does show that we have some control by shoring up our reserves (decreasing our pool leak)

  • That's a very interesting theory, erash, and it makes sense. I read a similar article on brain health and MS the other day, and it again emphasized the need for better care of our brain health ... especially physical activity and social interaction.

  • Hi Eleyne92, My situation is identical to yours! I go back about 29 years to recognizing first ms attack on honeymoon, but not diagnosed until 8 years ago. Now, (I'm 71) I was just told I've 'graduated' to SPMS. I'm working to come to terms with this as I lose more and more of my abilities. Also have super family as you do, very supportive and funny.

    My words of wisdom???? LOL concentrate on the things that impact you emotionally. Depression is treatable. Thanks to MS Society, I do water aerobics which they pay for. I constantly seek things to keep my mind active, Sudoku, my Kindle, going to get into chair yoga. I handle finances for several family members since finance has always been my forte. One of the few areas I'm still able to do as well pre MS. We are always doing projects that enable me to have flexibility at our home. Recently, got a scooter and vehicle to make traveling easier. Always surround myself with positive people, especially family members who are living comedy acts. I never take on anything that uses up what little energy I have. I save my energy (ha) for my sweet grandchild, you are fortunate to have several grandchildren, they are a joy. Sometimes, I feel like I'm hanging on by a thread then I inventory all the good things in my life. It really helps.

    You will find there are so many wonderful people on this website. You'll always have caring friends here. Best of everything to you. purpletustin

  • Great words of wisdom! 😊

  • Thanks for the encouragement, purpletusin.

    I'm generally a positive person, as well as easy going, but I'm finding it more difficult to shake off the struggles. They remind me that my normal isn't static, and it won't get any better.

    Exercise/physical therapy does help, and I aim for at least some daily standing. I am also glad the weather is starting to cool off so I can get out a little.

    My granddaughters are old enough now to do crafts, so I've been having fun looking for projects we can do together.

  • I do crafts with my grandson, I have taught him to latch hook, he is now latch hooking a pillow of Star Wars for his bedroom. I have got some good memories of doing crafts with him. He just won first prize with painting a Union Jack on a brick for the garden. Have fun

  • Welcome to our My MSAA Community, Eleyne92 ! Sounds like you have an excellent care team of family members, but we hope you know that you also have a great group of online peers here who also "get it" and can share with you about SPMS and other experiences.

    - John, MSAA

  • Thanks, John.

  • Welcome to the community!

    I'm glad to hear you have such a supportive family :-)... I wish you the best as you navigate through the news you have received. I can only say to take each day as they come and know that along with your family we as a MS community are also here to support you. Hopefully there will be more good times to celebrate for you than out weigh anything else.

    “You have power over your mind - not outside events. Realize this, and you will find strength.”

    ― Marcus Aurelius, Meditations

    I sometimes find this quote helps me. Maybe this can help you every once in a while as well.

    Many blessings and best wishes to you!!

  • Thank you, JeenaRae.

    I will add that quote to my collection. It's a good reminder.

  • I'm happy you've found this great support group. Like you, I've been 'upgraded' to SPMS. When my neuro told me this in July, I cried later that evening. That's quite a change from when I was first diagnosed in 2000, I thanked my neuro then. After years of symptoms and tests, a firm diagnosis was a blessing. Like you, I have a loving, supportive husband. I consider myself exceptionally fortunate and so very thankful.

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