‘Today you are You, that is truer than true. There is no one alive who is Youer than You.’ – Dr. Seuss

Today me and Dizzy are thinking about the loss of self that can come with MS. When we are in remission it’s not so much of an issue, but during relapses it can feel nearly impossible to hold onto who we are. It’s as though all the things that make up me have been swallowed up by the MS. All the things I love to do I can’t do, and I’m so tired I can’t even think properly. It has at times felt like the MS has taken over from all sides, and I’ve become lost. Losing all parts of my identity, and therefore feeling as though I don’t even know who I am anymore. 

Luckily this is something Dizzy doesn’t have much of a problem with, she knows she is a very important donkey, and nothing can change this in her mind! 🙂

But struggling with this can be really hard. It can also leave me feeling as though the illness has won, I’m too tired to keep fighting with it. But luckily at the moment I’m on the other side of one of these patches, and even though I know I’ll probably have to deal with them again in the future, I’ve been thinking about ways to help me get through these times when they do appear. Dizzy’s been a very helpful donkey, and has even volunteered her own ideas too! 🙂

  1. Do things that you enjoy – Find small things that you can still do that you enjoy. Even if it’s just tucking up into bed with your favourite film on. 
  2. Talk to the people closest to you – They love us for who we are, and can help us to remember this. It’s also important to keep in touch with people, to remember that we are still apart of life. 
  3. Be kind to yourself – Don’t expect too much from yourself. Dealing with chronic illness is really hard, and just by surviving we’re doing pretty well. 🙂
  4. Find new things that you can do – This will probably be something little; that you can do in bed. 🙂 This could be some colouring, or reading a new book. 
  5. Remember that you will always be you, no matter your illness – No one and nothing can really take away who you are. You will always be the amazing you that you are. 🙂 
  6. Accept how you are feeling  – It’s natural to struggle through these times, and it’s important to acknowledge our feelings instead of trying to push them away. Sometimes writing them down can help with this. 🙂 
  7. Get a Dizzy, they are always good with reminding you of who you are

I’ve also come to realise that all our experiences make us, well, us. 🙂 These times aren’t easy, and to be honest, I’d rather just skip them altogether. But really, we’re not actually losing our identity, we’re building them. 🙂 

Have you even gone through times of feeling like you have lost your identity, and no longer feel there’s any part of you really left? How did you get through it? 🙂 xxx

“I am out with lanterns, looking for myself“- Emily Dickinson

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72 Replies to “Who am I?”

  1. I feel lost too sometimes! Get a Dizzy… Great idea!! Actually, all the ideas you mentioned are wonderful. I also listen to music which sometimes brings me to an active enough state to get a jog in. If not, I rely on my dog Zen to push me! Not walk me. Just push me! 😁

    This post was wonderful! 🤗

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    1. Music is a really good one! 🙂 It can always make me feel uplifted. And a little doggy to push you is a great one! Maybe I should change it to ‘get a Dizzy or a dog’. 🙂 xxx

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  3. Great tips! Yes it is easy to feel like you are losing yourself though. Because my recent surgery was preplanned, I was able to prepare for the down time, unfortunately I am not prepared for the ms downtime…. I need to work on that, and your ideas are fabulous…ty!

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    1. I think that’s the other problem with MS, you never know when it’s going to flare up. One day you’re pottering along not too bad, and the next day you can’t do anything. It definitely makes it mentally harder. xx Hope you’re doing ok. 🙂 xxx

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  6. Excellent post, Heather. (Even though I’m so sorry you’re having to deal with such deep issues – sigh)

    I’d like to add something that might help make you feel like you’re also ‘progressing’ in current pursuits while (whilst?) you’re in the ‘far side of the moon’ MS cycle.
    Yes, indeed, ‘tuck into bed’ and listen to violin music – classic pieces along with just whatever pieces the ‘great performing violinists’ have recorded. Ask your teacher for recommendations. It is a slice of learning an instrument that is often overlooked. As you progress in your studies you’ll hear different things and even find yourself mentally figuring out things such as how a certain passage was executed and then realize that you understand it! Even if those types of things don’t occur (but I’m betting you’ll be surprised about that) this ‘immersion’ into the music is truly a part of learning – and it’s pleasant to do ‘whilst’ tucked into bed.

    Take care
    peace

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    1. You are so right. I have been listening to violin music! But I then think that I can sound like that, pick up the violin and a completely different sound comes out! Lol. 🙂 x It is such a good suggestion, thank you. How are you? xxx

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  7. I am so sorry that you are living with this upheaval at this time………i know the fear of loss of self is very scary and leaves the thought……….is this my new normal? which strikes the fear of God in you………..may you feel the love of others surround you as you heal.

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    1. Luckily I’m now out of this period now, but it has made me realise I’ll probably have to face them again at some time. I think also the unpredictability of MS doesn’t help, you always feel like taken by surprise with them. xx Thank you for your comments, and I hope you have a lovely weekend. 🙂 xxx

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  8. This is such a good post. I can understand how loss of self applies in an MS flare up. But it can apply in many other aspects of life too. I have had some times in my life when I lost my sense of self and my sense of my own value as a person. I had episodes of clinical depression in my 20s and it was hard for me to feel I was worth anything. Being with friends helped as they would just carry on as per normal and it would make me carry on with them. I also used to go to dance classes as the endorphins from the exercise helped to lift my mood.I realize this is not possible in an MS flare up but your idea of coloring is very good.

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    1. I’ve never had depression, but I felt the loss of sense of self when the anxiety was really bad. It’s so hard to see a way through it too. x I’m so glad you had friends who helped, having people around you that love you make such a difference. 🙂 And dancing is a brilliant one! When I am feeling up to it, I love a little dance around the house. 🙂 xxx

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  10. I am glad you are in a good place now and not suffering any of the ravages of MS at this time Heather. I wish I could offer you ideas or suggestions for when you are lacking energy or motivation to keep going when you have a relapse. At that time, I can only offer a hug from far away. I think I told you before that my mom had chronic pain from a car accident at age 11 … she spent four years in the Hospital for Sick Children in Toronto and when she came home at age 15, life was never the same. She was stoic, though in pain her entire life and for that reason, I can have empathy for you and realize my good health is a blessing from God, one that I never take for granted. Do you do needlework, something you can do in bed — my mom was an avid knitter, although she made four afghans in a row and developed carpal tunnel syndrome … she should have quit at one! She had the surgeries on both hands, and never knit again though. It might be a great hobby for down days, and Dizzy being a knitted kind of donkey would certain approve of such a hobby!!!

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    1. Hugs from afar always make a difference! 🙂 And unfortunately I was not gifted with the talents for knitting. I have tried…it did not go well. Even though I would love to knit a little friend for Dizzy and the other donkeys! 🙂 Maybe I should give it another go one day. xxx

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      1. That’s good – I am happy to provide hugs from across the pond Heather {{{ }}}. My mom tried to teach me how to knit multiple times and I would drop stitches. She tried to teach me years ago, before VCRs were invented and I wanted to stay up late and watch TV shows on a weeknight and I’d nod off if just watching TV (sometimes on the commercials). So, she would cast on the stitches, knit a few rows and then hand it to me. Every commercial I would hand it back to her and she had to put down her own knitting. That lasted a few weeks, then she nicely told me to find another type of needlework to do.

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          1. Funny you ask as I was going to tell you what I did and I don’t even think people do this anymore … I did something called “Pretty Punch” … you used an embroidery hoop and bought stenciled linen patterns, like if you bought a “pre-stamped” outline of something to embroider, and instead of embroidering you used a “punch stick” and you could do different lengths or textures according to how heavy the wool was.
            You punched in and out and moved along until you filled up the whole area with the colors you picked. I did different designs –
            I had a MIckey Mouse which took the entire front of the sweatshirt and also Hershey Kisses, some animals. What you did was punch until you were done with the design, then you cut it around the end, being careful not to cut the threads, then you put this very sticky glue on the back of the linen, and pressed it onto the front of a sweatshirt. Sweatshirts worked best as they were heavy.
            I did it for years and made some as gifts as well, but then VCRs came out and we could record shows and watch them on the weekend and not have to stay up late at night. I gave all my wood and punch stylos to my neighbor for a garage sale – someone came to the sale and said “OMG – I love Pretty Punch – I’ve been doing it for years and bought everything … she was in Heaven!” I’ll be darned – there is a website devoted to supplies for doing punch embroidery! It shows samples of the finished products. And there is a Pinterest site as well with the starter kits … I am surprised, but I liked it as I could watch TV and do it and not fall asleep. We have a rainstorm now – the fifth time we had rain today. Here are the links Heather. I wonder if they make it in the UK, but you could have it shipped there.
            https://www.pinterest.com/pin/191403052897027115/
            https://www.punchneedlemarketplace.com/

          2. I have never heard of it before, but I looked at the links and googled it. It looks really fun! Would you ever be tempted to do it again? 🙂 xxx

          3. See I almost mentioned it the first day and I thought it was obsolete because knitting is such an “in” thing now. I know they had knitting classes at the alpaca farm and they sold their knitted items to the gift shop. Maybe knitting works with a tutorial and probably there are some on YouTube … YouTube is my go-to place when I want to know how to do something, especially when I have issues with Microsoft Word or Outlook and can’t figure something out – I find it easier to watch a tutorial online. I just made so many mistakes with knitting … my mother would say “count your stitches at the end of every row if you think you dropped one” … okay, so I went back and not only dropped one, but two. She would knit away, needles flying and so rhythmic and I was slow and still made mistakes. I should have kept my Pretty Punch materials but I did not and it’s too bad as you accumulate all the spools of yarn and don’t always use them up, so you can mix and match colors sometimes to make the pattern more interesting. I don’t think I’d go back to it again as I’d have to start from scratch with all the materials … I still have two sweatshirts that have the designs on them. The Mickey Mouse I’ve saved and never worn and the Hershey Kisses sweatshirt I designed myself, just making the candy kiss from drawing it – I’m no artist, but the candy kiss was easy with its tag on it and I used glittery yarn for those a metallic yarn to make it look shiny. Are you going to try it?

          5. I think so too Heather. I still have my mom’s knitting bag. She has a lacy baby set that is almost done in that bag that she never finished, and a few skins of wool stored in a hassock. In the knitting bag are various needles and some patterns and little gadgets and gizmos used through the years. I’ve saved the entire bag thinking – will I have patience to try again, maybe when I am retired and can give it another try? I have a good friend who loves to knit and she is in grad school (went back to school last year after being out of school 39 years) and never gets time to knit anymore, and a fellow blogger on here, a school teacher, loves to knit and is always showing scarfs or tops she knit … maybe one day I’ll try. Now I wish wish all my heart I had saved my supplies – had big plastic containers filled with patterns, spools of wool, etc. … I’d have given them to you as I gave my neighbor a lot of things from the basement and just told her to keep whatever she got. You will like that you can make a unique sweatshirt – my first item I made was a tote bag – you could buy them at Lee Wards which is now out of business. It was just a plain tote bag, no zipper or closure, just to carry books and I put a bear on it. It was good practice.

          6. Aww, thank you, but it sounds as if the person who has them now is very happy with them! 🙂 And I know a few people who knit too, I love seeing them on trains and the underground, even though I have no idea how they manage it on a moving train! xxx

          7. I didn’t meet the woman who went to my neighbor’s garage sale, but my neighbor said she was ecstatic as she did Pretty Punch; likely some people did not know what it was. I think people tune out everything to work on their knitting … I sure don’t know how either!

          8. I think my comment might have gone to SPAM – I’ll wait and see if you find it … you said sometimes it does not “land” on the site right away. If not, I’ll comment again on the Pretty Punch, okay?

          10. Me neither Heather and I notice when I check my SPAM every day they are promoting this new Gutenberg way of publishing – I’ll wait til the very last minute to try it out and I’m already dreading it. Hope they don’t launch it on a weekend when I have a ton of pictures and a long story. 🙂

          12. I agree, I notice it when I clear out my SPAM – I’m waiting for the day I go to post, and it is there. I’ll take a screenshot to show you – I know there are different ways to check SPAM, and maybe you check via “Comments” – I do that sometimes too; other times I check SPAM via the Dashboard/WP Administrator at the bottom. That’s where I see it. Ugh! I used my search button a lot and always have. I do it if I want to see if I used a picture or I have a headline I want to use and want to see if used it before. One day I went to use it and the “Omnisearch” button was not in the dashboard in the place on the left-hand side. I thought I missed it or maybe they were updating WordPress, so I used another headline. So I tried the next day, couldn’t find it. I wrote to the “Happiness Engineers” and said I couldn’t find the Omnisearch button – did they relocate. They said “not many people used it, I guess you did, but it was not popular, so we eliminated it.” That person gave me directions to do code to put it back. I read the instructions – wasn’t that clear TO ME and I wrote back and said “could you please just do it – I don’t want to mess up my site?” They said it was easy and to try it and if I had problems to write back. I didn’t try it. I stewed about it and a few weeks later, I wrote again and said I really utilized that search feature. I had a nice guy who made me a 0.30 second tutorial where to find what I had to do, how to do it – tried it, no problem. I use it also if I want to link it in a current blog.

          13. I do love the name ‘Happiness Engineers’, and so far they have always manage to help me. I’ve just given up a few times and sent them my password to sort out the problem and they’ve always done it straight away! But all change confuses me for ages. They changed the buttons round on twitter a few months ago, it threw me off for weeks! 🙂 xxx

          14. Me too – I resist change. I am on Twitter too but I don’t post anything, and if I do it is rare. I really only follow some different people from the news station I listen to and a few meteorologists. I will stop and say “hey” – I am “Walking Woman” … I had to contact the Happiness Engineers as I had a stray italics code in my text and I could not find it and all the posts going forward were in italics. They did some type of search and found it – I could not find it. I never used any italics for years after that.

          17. I know! It really took me about 3 looks at your profile to realise it was you! I linked the walking, and then finally saw your name on a tweet further down. 🙂 xxx

          18. I really don’t tweet much, but I do comment on the news site or weather site or sometimes on Tofino Photography. I follow Tofino Photography – Wayne is a photographer in Tofino, at Vancouver Island, British Columbia and he takes awesome photographs of wildlife and scenic photos from that area. I am in awe of his photos, especially the bears and eagles and sea lions, seals, like this set of pictures of a bear he posted yesterday: https://tofinophotography.wordpress.com/2018/10/09/searching-2/

          21. Heather – here is the link to the Wyandotte Patch and if you scroll down a little you will see my last post (Tuesday Musings) … their format is very different in that you post pics which appear in a gallery that you have to arrow through. And the format for the pictures sometimes cuts the photos off a little especially when they are vertical, so that is why I display my actual blog site address if readers want to read the post and see the pictures that way. I can configure the picture every which way sometimes and their format still causes issues.
            https://patch.com/michigan/wyandotte

          22. I clicked on it, but it says Patch is unavailable in most European locations. I wonder why? They say that are trying to change this though, so maybe I’ll get to see it one day. 🙂 xxx

          23. That’s odd but maybe it has something to do with what you have to do on WordPress and the privacy laws like GDPR. I haven’t done that yet to my site … I can send it to you at Twitter – maybe it has something to do with WordPress. I am doing something very boring and nodded off here at the computer. 🙂 I will send it to Twitter – maybe it is different there?

          24. Yes please. Hopefully that will work! 🙂 And what are you doing that’s so boring? I’ve just finished work for the evening so am considering finding a film to watch with Dizzy. 🙂 xxx

          25. I revised a witness outline for an upcoming grievance hearing (in December) … we revised the 37-page outline at least 10 times in the last week. And it is all numbers throughout the outline. I am waiting for the furnace tech to come – I had a noon to 5:00 p.m. window … I am going to call in 1/2 hour to ensure they didn’t forget me. You two enjoy the film – no butter and salt for you Dizzy!

          26. That doesn’t sound very exciting. I’ve just been online tutoring today, but I think that was probably more interesting than your work for the day. x And I shall tell Dizzy so! 🙂 xxx

          27. It was boring and I just finished before the furnace tech called and said “I’ll be there in 37 1/2 minutes” … hmmm. I figured he did a Google map, but it was already late at that point. Told my boss I had just finished the long outline and was going to shut down by 4:50 so I could be ready for him … he didn’t get here until one hour later. Grrrr. I was standing at the front door so I could open the side door for him. He didn’t leave until 7:00 p.m. – the evening has flown by. I was happy to escape a little early … the next thing I had to do didn’t look much better. 🙂

          31. I’m so silly sometimes! You’ve already found me on there! It threw me off not having Linda in your name on there. It doesn’t take much to confuse me! 😆🌻xxx

          32. I use my alias. 🙂 I blog at Patch.com which is hyperlocal online newspaper found across the U.S. It used to be owned by AOL. So I have my blog at the Wyandotte Patch, but when I created the account I called it “Reflections and Recollections” … I joined in 2013 and there were a lot of us, across the U.S. blogging at difference Patches. So, one person was in “charge of” all of us and she was the Community Engagement Editor – her official title. She was on Twitter and asked all of us to follow her as they wanted to get to 1,000 followers so I created an account. Decided not to use my real name – I don’t know why, but that was the first name I thought of and “at old shoe leather” … 🙂 you have many followers! I just use my Twitter account to follow WWJ, the radio station I listen to as they mention articles on the air that I want to read. And the weather people … must follow weather people. I don’t have TV so I have to catch up on the news online.

          33. I’ve never heard of Patch.com, I shall have a little look. 🙂 I do use twitter alot, everyone is so nice on there. And Dizzy is a big fan of it. 🙂 And I think not having a TV is a good idea. We do have one but I hardly ever watch it! xxx

          34. My mom and I stopped watching TV in the early 2000s … she had difficulty getting down into the chair and we tried a few chairs but couldn’t find one with arm rests. She’d sit at the doorway – didn’t work so good as she was hard of hearing. So we mostly stopped TV. I got her a small TV for her room and she watched the news and a few shows in there, but it was a digital TV and it often froze. I really don’t miss TV either – it seems I spend so much time online anymore, I wonder how I’d fit TV viewing in as well. Things changed for TV after VCRs came along … you are much younger than me, so you always had VCRs or DVDs for recording TV shows … used to be you had to stay up to see shows and also decide between which ones to watch if they were on at the same time. The VCR changed all that – record them and watch them all the weekend by zapping through them. That’s why I started the Pretty Punch as I would nod off watching TV at night. (even when I was young … just relax and nod off on the commercials).ee

  11. An excellent blog post. I especially like number 5 and 7. It can be so difficult though when others don’t accept you for who you are and also dealing with the loss of things you used to be able to do and things you have lost. Unfortunately Dizzy’s are so expensive to get in Australia because of the shipping costs but I will have to invest in one one day that I can hug when I’m having a bad day.
    I am still having trouble accepting my new self with my condition.

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    1. It is hard, you can sometimes feel like you’ve lost your purpose too, and it can be hard to move forward at those times. xx I always forget about the shipping costs! Or I can pick up one for you when I’m next there and send it on to you. 🙂 Might not be till next year though. xxx

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  12. Had to give up my career as a network engineer. Used to be the center of my life. Miss the people I knew working in that industry, but they also have all relocated to new parts of the country with new careers. So now I try to put the stories I have stuck up in my head down in electronic form!

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  13. Such an important topic and I’ve felt like this quite a lot myself, but since other health conditions and the stoma, too. I’ve lost a lot, my life has changed considerably, and nothing is as it was nor as I thought it would be at this point in my life. The sense of who I am has changed and there’ve been ample times I’ve questioned who I am. “Remember that you will always be you, no matter your illness ” – so very true. And it’s not necessarily even that we lose who we are, we just need to remember and rediscover those parts of ourselves. Or, where change is needed, redevelop and adapt them. Brilliant post and well done Dizzy on your tips too! 🙂
    Caz xx

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  15. Good post.. I still go through this when a relapse hits. Seems to be the one thing that doesn’t go away. Out of a relapse though, I do what I can and give thanks that I am still able to do little things. Always having a laugh and love life. Some days are harder than others, but tomorrow is a new day so they say. Hope today was a good one for you and Dizzy.😊x

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    1. It’s true, and such an important thing to remember. During the really bad days, I just always tell myself to take each moment at a time, and that tomorrow is a new day. 🙂 x I hope today was a good day for you too. 🙂 xxx

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Let us know your thoughts, they always make for a very happy Dizzy :)