I’m done with MS. I don’t want it anymore.
Of course, I never wanted it in the first place, and I have spent the last decade trying desperately to live with it, accept it, embrace it, even to love it as part of who I am. But there can be no love in this relationship, not really. It’s all very one-sided. I spend my life tiptoeing around my MS, trying my best to appease it and make compromises that I don’t want to make. But all I get in return is abuse and feelings of failure, frustration and never-ending disappointment.
Unfortunately, you can’t divorce yourself from something like MS, it clings on tighter than a tick to a deer.
I’m trying to recall a time when my MS has made me feel this low. I came close in the year of my diagnosis. I came close when I was pregnant for the 2nd time and had foolishly ditched my happy pills. I came close last year, before lockdown, when I felt the weight of my MS more than ever after a relapse left my leg in a state of permanent semi paralysis. And here I am now – facing a tough hill to climb. I am full of expectations that can’t be met. I want to walk my kids to school but can’t. I want to cycle around the fields surrounding my village but can’t. I want to run around the park with my children but can’t.
I hate being this negative. When MS nudged its way into my life, I made a promise to myself that I would focus only on what I can do, not what I can’t. Easier said than done. I know full well that being negative does nothing but damage when you have a chronic condition. But it is incredibly difficult to climb out of this unhappy hole once you have fallen into it.
However, I will get out of it. I have to, if for no other reason than my children.
I am making the first (wobbly) steps to pick myself up. I’ve gradually opened up a bit to family so that they know that I need (even) more support than usual. I’ve had a call from Tony from Mental Health Services. I have my MS nurses and my GP on high alert. And I have my counsellor. But ultimately there is only really one person who can pull me back, and that’s me.
Heeeeaaaavvvvvveeeeeeee. Ouff. Can someone give me a leg up?
The Wibbly Dinosaur 
I’d send you hugs, but I know you’re not big on the physical comfort. Sending you a big 👍🏻
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Thanks for the thumbs up, muchly appreciated x
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Hi I know exactly how you feel. I would love to go walking around the hills. I miss having a dog to take for a walk I’m still contemplating getting a little one just for the companionship and just getting someone to walk them for me. I am getting back to my yoga in a couple of weeks and aqua aerobics a bit of exercise makes you feel good even though the fatigue will kick in later it is worth it. We have to try and stay positive but it is so hard sometimes . I am a strong person usually but still have a cry now and again just to relieve the tension inside. Life is what you make it but why does it have to be so frustrating.
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Thank you. I’m usually very strong too, but I guess no-one can be upbeat all the time! Aqua aerobics sounds fun, I’m desperate to get back in the gym but waiting until I’ve had 2nd jab to be safe. Thanks again for your comment and continued support, it means so much to receive messages from other MSers.
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Thank you for being so honest, it’s so tough, we try so hard to be positive and accepting but that takes energy too, something that is in short supply. Have you read the poem “I was sent to Holland “? I too am struggling, it may not help but you are not alone.
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Oh wow, I just read the piece, I assume it’s the one you meant, it was entitled ‘Welcome to Holland’. It was very powerful!
It’s comforting to know you are not alone, but sad to know that others struggle. Thank you for your message.
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Thinking of you. You are not alone. 👍🏻 🧡
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Thank you
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You aren’t alone in this. I find it so hard to drag this leg round, hardly able to walk let alone run. When I think what I could do only 5 years ago it makes me so frustrated, sad and angry. Hey ho. Sending virtual hugs x
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Thank you, Cathy. As always, I appreciate your comments x
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Thank you for sharing your honest feelings. It’s OK not to be OK. We are only human. I hear positivity & hope in the following sentence “ultimately there is only really one person who can pull me back, and that’s me.” Remember feelings are fluid & what we feel now will not last forever. I follow your blog & in all your posts i see your strength. Remember “we don’t know how strong we are until being strong is our only option.” Sending positive thoughts & warmth x
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What a wonderful message, thank you. And it’s quite fun to be quoted, LOL. Thank you for reading my blog and engaging with it x
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Keep fighting for your lovely children, your family, your friends & most importantly yourself. Love you ❤️ Xx
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Thank you, Lisa-Lou. Love xxx
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I often think about what I used to be able to do and it makes me sad so I understand how you are feeling. M.S is evil. Please stay strong, you are not alone xx
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Thank you x
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🦕 🦖 🐲 🦕 we love you wibbly, Oh wibbly we love you 🦕 🦖 🐲 🦕
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I’ve been singing this all morning, thank you !!
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I feel this post. This has been me and last week I admitted defeat which is very unusual for me. Sending positive Dino 🦖 🦕 light in your direction. Also, being a rainbow girl I feel the ‘when it rains, look for rainbows 🌈’ really applies to me at times of having an MS wobble. Big love to my favourite blogger xx
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Thank you, Emily (great name by the way). I’m always looking for rainbows, as are my kids, they’re so magical : )
Love, your favourite blogger (LOL) x
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Dearest Emily,
I read all your posts, I never comment. however this time I feel I must. Emily you have a gift, your writing is incredibly raw, honest and heartfelt. This post has pulled at my heartstrings and made me cry. No one can feel what you are going through, this is your journey, a painful, unending journey.
We can however offer our utmost love and support of you, for who you are and what you endure on a daily basis, your courage and your resilience in the face of a debilitating disease has not gone unnoticed, you have shown such determination to push though no matter what, to endure who knows what, I can only imagine your daily discomfort and pain.
Emily, my beautiful Niece, in New Zealand we would say Kia Kaha, Stay Strong, you’ve got this, you can and will pull through, you are surrounded by love more than you know, don’t give up xx .
Your posts must touch so many lives, i’m sure that I am not the only one that has been reading them and not commenting.
I do not have MS but I can tell you reading your posts make me feel incredibly grateful for what I do have. Along with every thing I have I also have you, an outstanding Niece that can write and express vividly the painful journey of MS, keep writing and sharing Emily, you will have a lot of silent supporters in the wings that you do not even know about, I know they are out there as I was one one of those silent ones until now.
We love you.
Kia Kaha,
Auntie Sheila xx
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Kia ora, Auntie Sheila,
This message means more than you can know. Thank you for reading my blog, I didn’t know you followed it but am so pleased to hear that you do.
I don’t generally let MS get me down, I’m pretty used to it by now, but sometimes depression kicks in and it’s so hard to shake it off, particularly with lockdown still restricting our lives here in the UK.
I’d so love to have a trip planned to NZ again, hopefully in the coming years when the kids are old enough to endure the flight – the thought of taking Rex on an airplane for even an hour fills me with horror!
I love you, my totally awesome auntie xxx
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Dear Emily
I, too, always look forward to your posts and never comment, mainly because they are so well written, on point and humorous about a situation that often can only be survived with a bit of a laugh at the absurdity of this all, that I cannot say much more. But this time I must send you my thoughts, so you know how much support you have and how much your blog touches me and many other MSers.
I feel for you. Thank you for sharing much of yourself, in all your posts, but particularly in this one. I have just hit the bottom of yet another deep and uncomfortable hole. And when I reach the bottom I know that I have to begin the climb out, yes with a strong network around me, but I have to fond the strength. And being reminded that I am not on my own in this, gives me that additional push upwards.
Wishing you all the best, stay strong and positive.
XFrancesca
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Thank you, Francesca. I didn’t realise how badly I needed to hear comments like yours! I know I have a lot of subscribers but I never really know how many people are truly reading and engaging, so I really appreciate your message.
Now, let’s get ourselves out of this smelly ol’ hole! x
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Ms sucks but Emily rocks 🤟🏼🦖
Just been reading all your comments and I feel very proud to be your sister! Look at how much of an impact your honest and wonderfully written blogs have on people also suffering this sucky deliberating disease!
Always here for you but wish I could do more and take it away 😔
You’ve got this 💪🏻
L xxx
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Thanks man. It’s really nice to see the support, I get private messages too – really gives me a boost when I know people are reading it! xxx
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I totally get you I’ve been there a few times and lockdown has really done me no favours I think I’m becoming agrophobic if my wife didn’t drag me out I don’t think I would, hope you continue to improve never give up 💕💕
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Thanks, Shaun – Lockdown definitely hasn’t helped has it?! Good to know I’m not alone.
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It is so hard to stay positive, but please take some comfort in the fact you help many people with your blogs. It’s ok to feel sad when you are dealing with so much, just carry on fighting for the good times as there will be many xx
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Thank you, Claire – lovely message x
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Just what I needed to read today! Thanks for honestly sharing. I am still mobile with MS after 44 years. My blog Surrounding Myself With Happy echoes your sentiments. Chin up and heave! Hope you’ve climbed up again, it’s exhausting. I’ll follow you and find out.
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