Me and Dizzy have done our first little blog post for Overcoming MS about our journey with MS so far. We thought we would share it here too, as it will probably be another year before we write so much for a post again…šŸ˜„Ā šŸ˜ŠšŸ˜Š

My Life with Dizzy

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If youā€™d told me four years ago that in a few months time I would have been starting a journey of feeling dizzy every day, I would have thought you were mad. For me, MS came out of nowhere. I didnā€™t have any relatives with the condition, didnā€™t know anyone that had it or knew of anyone that did. I didnā€™t even know anything about it, except vaguely that it caused disability.
I was 24 and halfway through my teacherā€™s training when my first symptoms began to appear. It was a week after I had broken up for the summer and I started getting pins and needles in my feet. I couldnā€™t figure out what could be causing it, thinking maybe it was something to do with circulation and asking others if they thought this was normal.
The tingling soon started increasing in intensity and then spread to my hands. I went to the doctors but they werenā€™t too worried as I appeared healthy and all my blood tests had come back fine. A week later I pottered off on a little weekend holiday with my boyfriend. While we were away though I had begun to feel light-headed and just generally a bit odd. It was on the morning that we were due to come back that marked itself as day one of my dizzy days.

I woke up and before I knew it I was clinging onto the bed as the room was spinning round. This went on for a few hours with me being sick and me deciding I could quite possibly be dying, I can get a bit over dramatic about things.

I ended up in hospital overnight on a drip as I had been unable to keep any fluids down while the room was spinning. Again, I was reassured that everything was fine and it was just an inner ear infection.

The summer went past with me spending my days in bed and wobbling around the house. Over this time numerous other symptoms started appearing: loss of co-ordination, numbness over most of my body, fatigue, vision problems, Lhermitteā€™s sign, the MS hug and of course, the constant dizziness.

I saw more doctors but none of them seemed to be too concerned about all of it, so I ended up turning to Dr Google. The only answer it had to my symptoms: MS. I ended up taking the decision to seek help privately and within a couple of months the diagnosis came.
By the time I was diagnosed I felt relieved. The months leading up to this had been a really frightening time. Google had given me the correct answer but it had also given me a lot of stories about peopleā€™s experiences with MS, that were, at the time, really scary to read. The problem is though that once you start googling, itā€™s really hard to stop!

After a few weeks of panic and sleepless nights, I stumbled across a blog post. It was a lady with MS who had had it for many years, and she was doing great! She had a list of lifestyles changes that she had made and a little link to the OMS website.
For the first time I had found something that provided hope. I knew that it didnā€™t promise an easy ride with MS but having something that I could do for myself was an amazing discovery. Before this I had been led to believe that what would happen, would happen, and that you were pretty powerless over what course it would take.
So, I set out on a little healthy mission, changing to a plant-based diet, doing meditation, exercise and lots of sleep! (To be fair the sleep one was already pretty much covered) And I started to feel better. I had over two years relapse free and most of my symptoms disappeared.
The dizziness stayed but at a much more manageable level. I learnt to look after myself and to know when to say no. I had also learnt to appreciate the little things in life and to do what made me happy.

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After exactly two years of being relapse free though, I hit three relapses over the space of a year. My diet was still on track, so were the exercises, but the meditation and stress levels had definitely gone out the window.
The first relapse actually hit me harder than the original diagnoses. I realised I had thought that I had somehow gotten away with it. OK, I have MS but nothingā€™s actually going to happenā€¦ Last year I lost my way a bit with my healthy mission and I really struggled mentally to come to terms with actually having MS.
But where am I now? Back on track, mostly. (I do still need to get myself a bit more motivated when it comes to exercising.) Last year I took the step into the MS online community, which is full of wonderful people.

I also realised I wanted to help other people going through the same thing. I started volunteering as a support volunteer for my local MS Society branch and started my blog: Living with Dizzy, and more recently my little podcast.

My little knitted donkey comes most places with me and sheā€™s helped me to document my adventures with MS. It only seemed appropriate to call her Dizzy as Iā€™m always dizzy!

So life at 28 isnā€™t at all what I was expecting but Iā€™m realising maybe thatā€™s not such a bad thing.

ā€œYou may not always end up where you thought you were going, but you will always end up where you are meant to be.ā€ Jessica Taylor

You can find the original post over at Overcoming MS here. šŸ™‚ xxx

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55 Replies to “My Life with Dizzy”

  2. It’s sad when you suffer from a chronic illness and have to do your own in-depth searches not just for the knowledge but because doctors supply so little…either also due to lack of knowledge – or just a lack of concern. šŸ˜’

    You and Dizzy have accomplished much, shared much, and inspired others. I wish you more success, more smiles, and more pain-free days. šŸ’œ

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    1. It is and I found it the scariest part. I knew what was wrong but the doctors just wouldn’t listen, you just don’t know where to go.
      And thank you for your kind words and reading our post. Very odd posting a post that’s so long. Dizzy’s been abit disgruntled about the lack of Dizzy photos though. There’s always more than this. šŸ™‚ xx Hope you have a lovely weekend Felicia. šŸ™‚ xxx

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  3. What an amazing story Heather. We never know what challenges we have to face but by being positive and focusing on what we can do keeps us strong. You have a great network around you and I am sure you have given hope to many others. Obviously you couldnā€™t do it without Dizzys help šŸ™„ x

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    1. Thank you Elaine. šŸ™‚ You are so right about keeping positive and focusing on the things you can do, rather than what you can’t (even if it’s not always easy to do). And definitely couldn’t do it without Dizzy’s help! šŸ™‚ xx Hope you have a lovely weekend. xx

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  4. Heather, this was an amazing blog about your MS journey. It sounds so familiar from what I have gone through. It is so great that you volunteer for the MS Society. Living with the illness you do understand it and can help others. It is also great that Dizzy goes everywhere with you. Seems like she is a good therapy donkey ā™”ā™”. I hope you have a great weekend. Thank you for sharing your story!

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  6. Great post. It’s so nice that you share your story with others. MS is such a scary diagnosis. My son was diagnosed at age 22 and presented with very similar symptoms as yours. Love your attitude.

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  8. It was scary to read that you went to a fair few doctors that missed your MS!!
    Although I have never met you Dominic and I feel inspired each time we read a post. We have all had our share of health worries and woes, but I think you handle this so bravely x I hope you do come down under one day and bring dizzy. Hugs to you

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    1. I know, even when I said MS they just said it was very unlikely to be that. :/
      And thank you. xx Give Dominic a big hug from me and Dizzy. šŸ™‚ We still want to come to Australia one day! Dizzy and Dominic can have a donkey tea party. šŸ™‚ xxx

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  10. ā€œYou may not always end up where you thought you were going, but you will always end up where you are meant to be.ā€ Jessica Taylor…. I have never heard this before, but will definitely add it to my list of things I need to remember!!!

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  11. Great post. It is such a strange condition and I completely understand what you wrote About how hard it hits after feeling that you have Ā«Ā got away with it ā€œ for a while. This summer I was going on long hikes and feeling great, but now i am having to accept that I might be in the secondary phase, which takes a lot of accepting! However, as we have no choice ( except taking the medicine and living healthy), it is onwards and upwards!
    You have a real talent in communication and putting it at the service of others is really admirable. On wards and upwards!

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    1. It’s the way you can sort of be lulled into a sense of security with MS, thinking that it’s quietened down and maybe just gone away. Then it really hits you when it reappears. I hope you’re ok. xx Have you spoken to a neurologist about maybe being in secondary phase? xx And thank you, I’m just grateful people read my posts! šŸ™‚ xxx

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  12. Great post! You need to stay connected to a good neurologist who can prescribe medicines to prevent future flare ups. The first one I was on was Avonex. It is taken once a week.

    Unfortunately, your body may become unresponsive to your medicine at any time. So you have regular blood test ran to keep an eye on your progress. Disease may take you down strange new roads. My experience started out like yours. Now I have secondary progressive MS.

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    1. I am lucky to have a great neurologist and MS nurse. I’ve only just started on my first DMD (I put it off for a while). Having an MRI this week and then one at the end of the year to see how its working for me. šŸ™‚
      Thank you for commenting about Jeanette and hope you have a great week. šŸ™‚ xxx

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  13. A truly fabulous post from a truly fabulous woman.
    I found this post so touching and warm. You spoke in such a wonderful way that I found myself relaxing as if I were listening to a close friend.
    Thank you, Heather, for … ohh, everything.
    Bless you, my wonderful blogging friend.
    Sending my love ~ Cobs. xxx

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    1. Thank you so much for your lovely comment Cobs. xx I’m glad you enjoyed reading it aswell, me and Dizzy have never written such a long blog post so we were abit nervous about it. Sending hugs. šŸ™‚ xxx

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  14. Thank you for sharing your story Heather. It is sad when nobody listens… You and Dizzy are such an inspiration. I think being proactive is the way forward more most illnesses. xx

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  16. It really was out of nowhere. I’m so proud to be your friend. Hopefully Dizzy will go away a little more so we can have some fun this Summer :-). Love you lots and lots xxxx

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  21. I love this! Iā€™m being evaluated for MS now after having to push for testing. Google also pointed me to MS as I have symptoms just like yours lol the only thing Iā€™m missing is the constant dizziness. Itā€™s so frustrating when doctors donā€™t take my hand and feet tingling and numbness seriously because itā€™s soooo annoying. Sometimes my foot will go numb while walking and Iā€™ll be dragging it along lol gosh life is a mess at times.

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    1. Aww, thank you Maudie. Xx I hope all the tests go ok. At least you’re now getting somewhere. šŸ™‚ when are your first ones? it’s so frustrating when you know something’s wrong and they just aren’t worried at all. The tingling and numbness is a bit annoying, and just so weird! Xx

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