Jenny I try and stay positive, I really do. When I shared that I’d recently been confirmed as having secondary progressive multiple sclerosis (SPMS) on my blog and on Instagram, everybody was absolutely brilliant, giving me so much support and praising me for working hard to keep going, despite the dark diagnosis. And I am generally positive. As regular readers will know, I do try to keep as healthy as I can be through diet, exercise, and meditation and I truly think that doing that helps to keep my mood stable to some degree. However, as positive as I can be, I can also be downright miserable and grumpy and sad and scared (just ask my husband). It’s not something I like to share too much on social media; it makes me feel so much better when I share uplifting content rather than depressing content. But that’s not the true face of MS. The truth of MS is not just in damaged myelin, strange symptoms and tiredness, it’s also people feeling happy one minute, even optimistic, and then completely down in the dumps the next.
The truth of the matter is, I hate that I have MS.
I hate the fact that I walk with a limp, that I drag my foot so that it makes an annoying shuffle sound and that it feels like I’ve got a sandbag attached to my leg 24 hours a day. I hate that I have to use crutches and a scooter. I hate the fact that my disability impacts on every area of my life – work, relationships, hobbies, social life. I hate the fact that I can’t run anymore, that I can’t do heart pumping exhilarating exercise. I feel jealous of friends doing the Great North Run, or attending fun Clubbercise classes.
I hate the fact that I have to plan everything – I have to check to see what access is going to be like, whether there will be a place to sit, or whether the street will be so cobbley that I can’t use my scooter. I hate the fact that I have to plan my days around my need for a nap and that going out just for an afternoon means that I have to spend the whole of the next day recovering. I hate that I can’t just hop onto a train and go out for the day without having someone with me to help with my scooter and I hate that so many lovely areas (beaches, cities, forests, stately homes etc etc) are inaccessible to people with mobility issues. I hate the fact that I adore London, but have not had the guts to visit it since my mobility has worsened, as I have heard so much about how the Tube is inaccessible for the most part.
I hate the fact that I haven’t felt rested for a good couple of years now. I hate that I wake up in pain despite taking drugs to try and stop the crippling cramps and spasms of my legs and toes. I hate that my husband can’t cuddle me in bed easily because my legs go into spasm.
I hate that I can’t go down to the water when I go on a beach with my kids and that I can’t paddle through the surf because of lack of disabled access on most beaches. I hate the fact that I can offer to help out at my daughter’s Brownie class but that I have to be sitting down for most of it and that I can’t carry things around. I hate that I have to ask someone to help me with opening doors when going to watch my son swim, or going to work, because of a lack of disabled access doors in NHS premises and leisure centres.
I hate that I can’t even clean my house easily by myself. I just want to be a ‘normal’ person who is able to carry out every day boring and mundane tasks and activities with ease. I resist the urge to get a cleaner; not because I don’t want a tidier house, but because I want to make the choice to have one not because I need one but because I simply want one.
I hate that MS is degenerative and unpredictable. That I have no idea whether this level of disability will plateau or whether I will continue to decline, just like I have over the last 6 years. I hate the fact that I won’t be able to dance at my children’s weddings, if I even live that long.
I hate the fact that I have to choose between my work and my quality of life.
I hate the fact that I am almost 40 and still rely so much on my Mum and Dad and my husband’s family too. They all offer so much help and support, I am so, so lucky and appreciative. But I don’t want to have to rely on them (or my husband, for that matter). I want to be able to help my parents, not have it the other way around. I want my husband to see me as the able, independent person he married, rather than a woman who keeps having problem after problem that impacts not only on my life but also on his and the children’s.
I hate the fact that my kids don’t know the real me, that they will never remember me as an able mum who can easily do what they want to do and go whether they want to go. I’m sad that they sometimes have more responsibility than other children their age because of my difficulties.
***
You see, there is so much I hate about MS. I’m so sorry for the depressing post. I have written before about positive things MS has given me but I’m feeling a bit melancholy today and I want to get it out there that just because I often share things that are encouraging and upbeat, it doesn’t mean that I always feel that way. This is the truth about my MS.
Really hoping that everyone out there is feeling a bit better than I am at the minute, I guess the confirmation of SPMS has really has knocked me sideways even though I suspected it. I’ll be back to my usual self soon – thank you letting me splurge it all out
If it didn’t get you down from time to time I’d be surprised. It’s an ugly condition and even my optimistic husband gets low now and then. It’s only natural. Thanks for sharing this post x
Thank you Vicki xx
I agree that you can’t remain positive all the time. But even without something like MS live continues to change and we just have to move along with life. Not always easy, but no one ever said life was meant to be easy.
Embrace what you can do and do as much of what makes you happy. Live and enjoy every moment, don’t stress about what was or what will be. Just enjoy life as much as possible.
Thank you! I’m ok most of the time, it’s just when it all gets a bit too much it is easy to feel down. I feel better for blogging about it!
I TOTALLY relate to all of this. ALL of it. In fact am going to PM you soon to talk about “worries”. Am not sure if you are allowed to swear on blogs but just wanted to say am so sorry it’s so totally SHIT. X
Sent from my iPhone
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Ha! I almost used that word several times in my blog post – it is shit, shit, shit, the shittiest of shits.
It’s not a depressing post, it’s a real post. Anyone who has MS or any debilitating chronic disease can relate. I could have written this post myself, I probably have somewhere. It is a tough disease. HOWEVER since the day I’ve been following you, I know you are strong, a great mom, wife, daughter and friend . I know this melancholy mode will pass, as they always do. We all have our pity parties and it is 100% ok. It’s ok to feel this way too.
Thank you so much Jamie. I do feel so much better for writing down my thoughts, I just had to get it all out! Thank you so much for your kind words – I don’t always feel strong but I’m always willing to try – I suppose that’s the most important thing xx
I agree with Jamie it’s not a depressing post. It is real and it’s important to share that side of it as well. We can’t always be 100% positive with all we deal with and it’s OK to have these moments.
Thanks Shannon. I feel so much better just by writing it down! Xx
🙂
Thank you for writing such a refreshingly honest post. It’s how most of us feel living with these crappy illnesses. I hate a lot of the things you mentioned too ☹️. It’s helpful to say it as it is as sometimes – for you and for everyone else. I bet it felt quite therapeutic writing this – I may write down what I hate about ME! Always find it helps getting thoughts out of my head and on to paper! Don’t forget you’re doing great 😊 xxx
Thank you so much Emma xxx you absolutely should write a post on how much you hate ME, it is made me feel so much better getting all out. Knowing that I’m not alone in hating my illness makes it so much easier to deal with as well! Thank you ❤️ xx
Oh hun. I have zero advice. I only hope that it made you feel a bit better writing it all down. I can relate to so much. Although I can still do a lot more than you, I really bloody miss running, I also can’t help at school or at Beavers because I would get too tired. Consider yourself hugged and squeezed tightly xxxx
Thank you so much! It has helped me a lot, not just writing it but also hearing from the amazing people who have responded to it. It is so lovely having people who are there to ‘talk’ to. Xxx
I agree too! It isn’t depressing, it’s a real post. I also agree its important to share as it’s impossible to always feel optimistic with MS. Great post and glad it’s helped you feel abit better blogging about it. I always find it does too. 🙂 xxx
Jen
You are amazing. You are dealing with something that would entirely floor other people and still you take the time to write your blog which provides comfort to others (it can be just as helpful to realise that others have the shitty days too), and even apologise for it!!
It’s no wonder you have so many people in your life that are happy to help, despite the fact you would rather they didn’t have to
XxxX
Thank you, Liz, for your absolutely lovely comment, it really made me smile xxxx
All of this resonates with me, and I love the honesty of your writing. I try to be positive too, but some days I think we just have to let ourselves be really honest about how hard it is living with an illness like MS. Thank you for your post, I’ve had a particularly hard few days this week, and reading this has reminded me that I don’t always have to out on a brave face x
We definitely don’t need to put a brave face on all the time -I think that if I let it all build up, I would just explode! That is why blogging is such a release for me. We are not alone, I have ‘met’ so many lovely people through my blog that I otherwise may not have met in real life, Hope you feel better soon xx
I have a stomach bug which is flaring up my ms symptoms so I’m definitely in the I hate ms camp at the moment too! I just wanted to say that I’ve learnt so many positive ideas and strategies from you on how to deal with this crappy illness, you are a real inspiration and a true fighter. Life with ms is hard and it’s no bad thing to acknowledge that. I also know that tomorrow you will pick yourself up and get back on with the fight! Xx
Thank you Natalie 🤗I have had a down few days but am feeling better after blogging about it. I hope that your stomach bug is settling down? Xx
Reblogged this on Dream Big, Dream Often.
Thank you!
Most welcome!
I am going to re-blog this, because you have just described my week. I’ve been denied over and over again financial assistance for the Ampyra that I’ve taken for almost a year. I went on Medicare this month and the pharmaceutical company will not give any assistance to people on Medicare. It looks as though I might have to wait until January for monies to become available. I feel like I have regressed even farther than where I was before I started the Ampyra. Plus the fact I feel last Monday and gave myself a fat lip and a nose that is all scratched up. I was standing by my car looking at my key fob and the next minute my lip was bouncing off the pavement. Agh!!
Oh no Jo, so sorry to hear that 🙁 Thank you so much for the reblog. That is a such a pain about the pharmaceutical company not helping you. Will the break from meds impact on your MS? I’m guessing it could 🙁 The system isn’t perfect here in the U.K. but I don’t think we have the situation of meds suddenly stopping. I hope that you’re feeling ok after your fall. Thinking of you x
My neurologist pulled out a miracle! She got me a zero co-pay for the rest of this year and a zero co-pay for all of next year! She’s my superhero!
That is brilliant! So pleased for you 🙂 What a fab neurologist, send her my way please 😂 x
😀😀
I have had issues getting the Ampyra. Originally I couldn’t start it because my insurance covered generic ONLY. They were happy to share that it’s only 1500 -1800 a month. That was then. I have had 5 different insurances this year alone! At one point with all the confusion I looked like I was going to be unable to get a refill in time and on doctor’s advice I went to one a day. Horrible. Try the drug company again, say lack of drug casuing negative impact (reduced dosage) they have to record it and that goes against them
My neurologist was able to get me approved! Not sure what she did but I’m glad she did it.
Reblogged this on Fearless and commented:
Sometimes you just have to say it.
Do you know the Twila Paris song, “The Warrior is a Child”? I thought of the lyrics when I read your post.
Lately I’ve been winning
Battles left and right
But even winners can get
Wounded in the fight
People say that I’m amazing
Strong beyond my years
But they don’t see inside of me
I’m hiding all the tears
They don’t know that
I go running home when I fall down
They don’t know Who picks me
Up when no one is around
I drop my sword and cry for just a while
‘Cause deep inside this armor
The warrior is a child
Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I’m amazing
Never face retreat
But they don’t see the enemies
That lay me at His feet
They don’t know that
I go running home when I fall down
They don’t know Who picks me
Up when no one is around
I drop my sword and cry for just a while
‘Cause deep inside this armor
The warrior is a child
Praying for you!
I love this, thank you so much! I am definitely going to have a listen to that song, the lyrics are so relevant to my life xx thank you once again!
[…] I just want to say huge ‘thank you’ for all the love towards my recent blog post about my true feelings around my multiple sclerosis. Can I just say that I feel 100x better for writing that post, I wrote it in super quick time and […]
So very glad you shared. I relate. I try to remain upbeat but face many of the same challenges. I said when this whole thing started that I wouldn’t let it define me or confine me and it has! Please know that you are not alone. And i HATE that people see me as a fragile, disabled little old lady instead of the confident woman with the three inch high heels walking with a laptop, projector and pocetbook. My stepson’s girlfriend only knows me as the woman she helps to walk to and from the car and who can only stumble in the house
Thank you so much for your message and I’m sorry it’s taken me so long to reply. I am struggling a little bit with keeping up with social media since I have returned to work as I’m just so shattered all the time! You’ve hit the nail on the head about not feeling like ‘yourself’ – I feel exactly the same way. Inside I’m the old Jen but people now only see that weak and feeble Jen who relies so much on help and support. You’re not alone! And it helps me so much to hear others going to the same things I am even I wouldn’t wish it on either of us 🙁 Take care xx
Oh Jen, you my dear do not always have to be positive. Yes, being positive can make a huge difference in your life, but it is hard sometimes. Even though you suspected the diagnosis, it is still hard to swallow. I find you to be a true inspiration and so encouraging. You are absolutely amazing as to how you handle life. Being able to write about your feelings is so beneficial. Blogging to me, has been a great outlet of emotions. It is even better when others offer support and compassion. I know we are like an ocean away from each other, but if there is ever anything I can do for you, please let me know. You have helped me so much with medication challenges that I really want to be able to do something for you! We are ALL here for you to offer you as much support as you may need! You have handle everything with so much grace! It is okay to ask for help, no one will ever judge you! Hang in there, things will hopefully get easier for you!
Love, Alyssa
Thanks for your transparency, people don’t realize how chronic pain affects ever aspect of your life.😞
Absolutely. Thank you so much for commenting on my post! X
I LOVE that you wrote this! People expect people with disabilities, chronic illness, and chronic pain to be “up” all the time. It’s as if they think we owe everyone else a Disney outlook on life so they don’t have to deal with our pain. The truth is they don’t. I’m realizing that hating my conditions is perfectly okay. I still do everything (almost) that I need to do but I don’t have to love the restrictions or anything else that makes my life more difficult. Jen, you’re an angel for writing this! Thank you.
Thank you so much for your comment Elizabeth. I first of all felt a bit unsure about sharing it, but I have had such a positive response and I am so glad so many people identify. It really helps to know others understand x