I have decided to launch a new feature on my blog and social media platforms called ‘Focus Friday’. Where I will be sharing truly inspirational stories from real people. To kick things off my first ‘Focus Friday’ inspirational story is by Julie. Julie is a member of my private support group on Facebook and I feel so honoured to know her. She is a warrior of all warriors and despite her daily struggles she fights on and at the same time helps others. She is one of the most amazing people I have the pleasure to know.
“During the time I was getting diagnosed and having treatment for my vestibular issues I discovered some other symptoms that concerned me. They were feelings of skin numbness, altered sensation on my right hip. I also had tingling and buzzing down my legs and fatigue. My Mum had MS and was finally diagnosed in 1997 after having years of symptoms. With that knowledge I visited my GP and subsequently had an mri and saw a neurologist who diagnosed me with MS in June 2018.
MS is not hereditary, but you are at a higher risk of getting MS if a family member has it. To say I was shocked and knocked for six by my diagnosis was an understatement. What followed was a good few months of crippling severe anxiety and panic attacks. I was so scared. I’m a single Mum. What would I do if I woke up one morning and couldn’t walk? Who would help me? I have very little family support as both my parents have passed away and I have no siblings. I was terrified! It made me hyper vigilant and I worried about every single twinge, twitch and weird feeling. Thankfully, mentally I am in a much better place now. I’m learning to not worry about things I can’t control. I try to look at self care a lot. I meditate, which has helped calm my mind. I also do EFT tapping and I attend counselling regularly. I read a brilliant book called DARE by Barry McDonagh. It is all about dealing with anxiety and panic, it really got me to think about everything in a different way. The other thing that I have found so helpful are the support groups I have found on Facebook. I joined a couple when I started to have Vestibular issues (Which is how I met the lovely Lara!) and have made lots of lovely friends through this. I don’t know how I would of got through some days without these two groups, I’m so grateful for them. I’ve also joined MS support groups on Facebook too which have been so helpful when I’ve needed them. I now try to support others on these groups that are going through the same as me or similar. I know I’m a people pleaser, I used to put everyone else before myself. I was always on the go. A very old friend of mine once described me as the most selfless person he knew. I’m proud of that. I’m also very empathetic and I will always be there to support my friends in any way I can. I’m definitely a researcher! I like to educate myself on things that are happening to me or people close to me. I love to glean information, so I’m a good person to have on a quiz team! Having MS has made me put myself first a bit more, I’ve had to as some days I’m just not able to do as much as I used to. I will say that time has been a great healer for me and therapy is invaluable.
There are different types of MS. I have relapsing remitting MS where I get flare ups of symptoms which may or may not resolve. All of my physical symptoms are sensory. So I get numbness, tingling, buzzing, pins & needles and other odd feelings! One of my body’s faves is making me think I’ve got an insect crawling on me when there is totally nothing there!! This means these symptoms are invisible to everyone else. However, I have to say my worst symptom is severe fatigue. Which I’m currently suffering with right now. It’s not a sleepy-tired fatigue, it’s more a physical exhaustion. Where it feels like you are dragging your body around, like you are walking up to your neck in mud. It makes my body hurt. I get out of breath doing things. I have to rest a lot. At the moment I can’t really walk far, so a shopping day out is pretty much out of the question! I feel like this EVERY single day. I sleep really well, I get a good 8 plus hours of sleep a night but I NEVER wake up feeling refreshed. I’ve seen it described as: imagine having the worst jet lag, the worst hangover and really bad flu all at the same time, then times that by 10 – that’s what MS fatigue feels like!
I know I do come up against criticism and judgemental people. Some of which are people I’ve know well and for a long time. This has mainly been since I’ve been signed off sick from work. Asking me if I feel guilty for not being at work. Or asking me what I do all day. Don’t you get bored? I’m sure I also get judged for claiming benefits, but I’ve paid tax since I was 16 as I’ve always worked so I think I’m allowed. I’ve even been told that having MS is all in my head! I’m sure some people think I’m lazy or boring because I don’t do much. I do go out when I can, and I accept invitations if I feel up to it. Sometimes I do have to cancel at the last minute, which can be frustrating. But I want people to know it’s not because I can’t be bothered or because I just don’t want to go. It’s because I really can’t. I don’t have the energy to put one foot in front of the other. I lead quite a solitary life at the moment, well along with my son of course. I won’t lie and say that is fine, because it really isn’t. But it’s a place where I’ve found myself to be. I’d much rather have a life filled with fun, laughter and lots going on but I am where I am. And I can’t expect everyone to treat me the same as I would treat them, as not everyone is the same as me. I do have lots of friends, and I have a core of my best and oldest friends that I can count on one hand. I know I’m not very good at reaching out for help or support as I’m fiercely independent. But I do know I can count on those core best friends forever.
I have no idea what my future will hold. I’m currently single, and Mum to a 14 year old boy. My MS is currently diagnosed as mild to moderate active disease. However, I’ve now been relapse free for a year which I’m so pleased about. Relapse free does not mean symptom free though. But I’m keeping everything crossed it stays that way.
My advice to anyone that has a friend, family member or work colleague that is diagnosed with MS is to do your own research into their condition. There is nothing worse than having to explain yourself all the time, over and over again! It makes you feel like a stuck record! We shouldn’t have to justify ourselves to anyone. There is so much info on the MS society and MS Trust websites. Offer to attend medical appointments with them. Also, please keep checking in with us. We do need support. We may look well and act like we are coping fine but we may not be. I’m terrible at asking for help. Offer to do things for them, little jobs around the home, reach out yourself to them – sometimes it’s difficult to not feel a burden to your friends. Bake them a cake. Offer to wash up for them. To take them shopping. Or even just visit them so they have some company, because sometimes a person with MS can feel very isolated and lonely. Don’t feel sorry for us, we are not victims! Be empathetic, have sympathy but don’t patronise. Yes, I have got a horrible illness that won’t ever get better but I’m still me! And finally, keep inviting us to things. We may not always be able to attend, but we are not dying! We are still here! And there will be times where our symptoms will allow us to do anything we want.“
Thank you for writing this Julie, I am positive it will help other sufferers out there and help them feel less alone and also give people hope.
Please like and share this story far and wide, it really would mean so much to Julie and I as more awareness is needed.
If you have a story you would like to share to the world and raise awareness at the same time, please submit it to me at firstname.lastname@example.org we would love to feature it.