I have Multiple Sclerosis. This has been a secret of mine for what is now over a decade and the people that know this fact about me were few and far between. As from today, however, I assume there will be a few more…
“What is MS?” If you asked this question to the next person in the street, chance is, they will have no idea. Chance is, you don’t know what MS is because sadly, there is close to zero awareness about this condition in Malta. Maybe someday, that will change and hopefully, this blog will help create just a tiny ripple toward that change.
Truth is, I have MS, and even I find it difficult to explain, because the disease is so varied and unpredictable. The symptoms of the condition are endless and differ from one MS sufferer to another, as well as one relapse and another. Dr Google will however explain MS as being a disabling disease of the brain and central nervous system. In MS, the immune system attacks the nerves causing communication problems between the brain and the body. What stands out, are the range of signs and symptoms, which can include double vision, partial or complete loss of vision, muscle weakness, fatigue, dizziness, tingling or pain, trouble with sensation or trouble with coordination and trouble walking. Reality check – Let’s agree that Dr Google, doesn’t make this sound promising, though, Dr Google hardly makes anything sound promising.
I have however, in the past ten years suffered at some point or another, from all of the above symptoms and much more. The MS I suffer from, is the relapsing-remitting kind, which means I experience periods of new symptoms, then after about two months of hell, the nerves begin to heal; in the most part anyway. However, to me MS isn’t just this. MS is an autoimmune disease, this means, my body attacks itself, which when you stop to think about it, is a very hard fact to accept. MS to me is my body betraying me at the age of 23. MS to me was feeling 100 years old when I was not even 25. MS is a secret I kept most of my life and I don’t even really know why. MS is a part I hated about myself for a very, very long time. MS is the reason I had to leave a job that defined me. MS is what made having children much tougher than having children already is. MS is wishing I can give my son a sibling but knowing that I can’t, because I would not have the strength to care for both. MS still is, a daily struggle. MS, is what made me think of death more often than I would like to admit.
However, this isn’t a story about doom and gloom. This is a story about life. My life. This is a story I want to share because today I am in a better place and I can. Because today I want to tell the person reading this, the person who has MS or any other disease, autoimmune or not, invisible or not, that you are not suffering alone and you definitely do not have to. Get help, reach out; whether it is to me or anyone else. I had been in therapy to reach acceptance of this condition for almost 6 years and it is this therapist that has given me the strength to be where I am today. Today, I am a Trainee psychotherapist myself, with a year to go for my final exam and I want to help other people the way another inspiring soul helped me. Today I want to share my story and tell you that having MS, hasn’t been all bad for me (though it was for an incredibly long time) so maybe, it doesn’t have to be all bad for you.
Over these years of suffering, I have finally given my disease purpose. My purpose is to help others suffering from diseases similar to mine and possibly, even help the families of these sufferers understand just a little bit better. It is to help every single person out there who feels he or she has been let down by their own body, those people suffering in silence and alone, simply because from the outside they might look fine. But I guarantee you one thing; if you follow my blog you’ll realise, looking fine doesn’t mean that from the inside, somebody around you isn’t screaming in agony or trying so hard just to make it through another day, simply because she or he, has no other way!
So that’s what this is about. It’s about living life with an invisible autoimmune disease and not just surviving, but managing to come out on top! Or at least, trying your damn hardest to every single day.
Thank you for sharing this.
Thank you for reading 🙂
Thank you for sharing this ❤️ . Im 35, and I was diagnosed when I was 29. I love this “Or at least, trying your damn hardest to every single day.” Again, thank you for sharing! It means a lot 🙇
Thank you for reading Chris! It means everything to me, and I glad that you like the ending of the blog. I must admit I do too 🙂
Excellent idea to have a blog to raise awareness. You’re such a strong woman, with a wicked sense of humour even on your bad days. It is a pleasure knowing you.
Likewise ! 🙂
Thank you for revealing yourself and your story. You are truly an inspiration!!!
Thank you David 🙂
I’m so proud of you ❤️
Thank you Madame 🙂
Well done Ilona yu are an inspiration for people who are passing through MS.
Thank you Carmen 🙂 I hope so!
Welldone!
Thank you Erika 🙂
welldone
Well Done Ilona, I was not aware at all and always thought you are a strong woman and this confirms my thought well done for this … hopefully it will help more awareness… Thanks for teaching me something today xxx keep strong xxx
Thank you Monique 🙂 xxx
Hi Ilona,
I too have MS and I found your blog very interesting. Thank you for sharing. I know some days are harder than others and everyones MS can differ. Its not easy but I agree that keeping on top of this disease and staying positive is important especially during these times.
HI Jayne, thanks so much for reading. I am so pleased that you found it interesting! It isn’t easy I agree and some days are worse than others. I have learnt to accept the bad days and be thankful for the good days. But these trying times haven’t been easy at all. In fact, I have a few blogs planned about that soon. Feel free to subscribe if you’d like to receive future updates of my blog 🙂
Well done! Great post- from a fellow MS sufferer. The personal touch into what MS is has been missing from Maltese literature and so many people need to read this to learn to accept this condition! X
HI Nerissa, Thanks so much for reading and thank you for your feedback. It’s so important to me, truly. I agree, people need to learn about the condition to finally accept it. I hope to be able to help a tiny bit with that! Please feel free to subscribe to my page for future blogs 🙂 There will be more ! Keep in touch. I really would like to hear from fellow MSers and their own journeys. XX
❤️❤️ thanks for this x
Dorianne, thank you for reading ! XX
I remember you having episodes of tingly fingers when we worked together…had no idea those were probably the first symptoms of MS. Well done for sharing your experience…it takes courage and a big heart. Look forward to reading your blog! Hugs xx
Hi Daniela! Long time no see 🙂 yes unfortunately they were the very first. A very very long time ago! Thank you for reading and for your beautiful comments XXX keep well !
Hi thank you for your detailed article I too have MS and Maltese communities do not offer much advice I always found lots of help and support from foreign groups which is a pity that Maltese people do not like to share their opinions with others that suffer with the same disease we should be more helpful towards each other
Hi Ramona, thank you so much for your feedback. I have to agree! There are many MS communities abroad that I myself reach out to but never found anything in Malta. I hope this changes that a bit 🙂 We can keep in touch here or on my FB page My MS journals! I’m happy to hear from you and I’m sure other MSers would be happy to keep in touch as well.
I will join you on FB but please keep in touch through email as well if you want, who knows maybe one day we would have the pleasure to meet each other. Take care xxx
Hi Ramona, yes for sure. Please feel free to email me should you so wish on info@mymsjournals.com If you subscribe to my website you will also receive an email from me letting you know I have a new blog post. Stay safe !
As soon as i graduated and started working…… Optic neuritis hit 80%blind… The eye recovered but the lesions in my head and spine were more than they expected…. 2 yrs taking the nightmarish avoxan and now three years on tec. 6 years now…. Still passing through the grief process(with a therapist) sometimes i feel i can conquer the world sometimes i can just conquer the bed. Dealing with ms is already a heavy burden, hiding it because it’s shameful to have a disease is a heavy burden for nothing (especially in malta). It s not like i drank a lot… Read more »
Hi Xarlene, I couldn’t agree more on pretty much everything you said. Yes I am aware about the MS society. I speak about shame on one of the blogs I will be posting next week, you might find it interesting. The grief process isn’t easy and there’s not timeline to it. Mine took very very long. Also, regarding the times you feel you can conquer the world and other times you think you can concur the bed, I say, that’s ok!! That, is part of the acceptance. Knowing your body and knowing your limitations and when you feel that staying… Read more »
Thank you for sharing your story. I do understand you as I too had kept my daughters’s invisible condition a secret for 6 years and when I came out with our story i felt relieved and have now managed to create awareness for CF too. I wish you the best of luck and lots of positive vibes xx
HI Josette, I’m so glad that you managed to create awareness for CF. In fact, I believe there’s much more awareness for CF than for MS in Malta and that’s a very good thing. I wish you and your daughter both all the best on this journey we call life 🙂
Thank you for sharing. For sure you will be an inspiration to many. I suffer from fibromyalgia and in many ways can relate to your story. it’s been a struggle and a learning journey for me for the past 5 years, through which I’ve learnt to understand my body and manage my every day pain, and most of all to try as best as I can to live a life as normal as possible.
PS: I love your blog ending too 🙂 🙏
Hi Jo-Anna, thanks for your message. I’m glad you could relate. Fibro in many ways I believe is similar to MS so I see your struggles xx Understanding and listening to our body I believe is key so keep doing that. I’m glad you like the ending 🙂 It’s my favourite part too xx Keep safe
Thanks for sharing and to raise awareness. As you said my people do not know about MS and the struggle of living with it.
Hi Daniela, thanks for reading! The only way they can know is if we tell them. So tell them. Educated them. Explain to them. I know it takes courage, but it takes courage to live with MS, so you definitely have the strength it takes. Keep well!
Thanks for sharing. I was diagnosed with MS on September 2018 and although I have read a lot about it, I think I am still in the grieving process and trying to accept this new me. I am 48, but have had a variety of ailments in the past. Now it’s almost comforting having a diagnosis and a culprit for all the different things you feel, the fatigue, the pain. Yet it also has a finality to it, like there’s no turning back. Sometimes it’s so difficult to describe to others what you feel, because there are days when you… Read more »
Hi Michelle, thanks for reading and for getting in touch. Grief is normal and it’s also very normal that it lasts for years. The diagnosis is comforting yes, but indeed final and that’s where the grief and eventually acceptance comes in. But it isn’t easy to get there. Same way it isn’t easy to live with MS. Travelling with MS is possible but with a difference. When you’re tired you stop. Listen to your body and if that just means being out in the morning when you’re feeling your best then that’s enough. Then you go back to your hotel,… Read more »
Well done Ilona . Sharing your experience with others is within itself therapeutic it makes you more brave and determined. Good luck for your studies
Hi Antoinette, I agree that it is 🙂 thank you very much and thank you for reading!
Thank you for sharing! I have rrms. My first relapse was when i was 18 and no one believed me. I got dxs at 23 too. I can truly understand you.
Hi Maria, unfortunately, an MS diagnosis is hard to get. It happens with most people and it’s terrible that the people around you or the doctors don’t believe you till they have proof from an MRI or a lumbar puncture. But we battle through it from day 1 and keep doing so every day after that. How are you now? Hope you’re doing well. Keep in touch 🙂 Thanks for reading and for messaging xx