Living with a chronic illness like MS can have its up and downs. I am generally a very positive person so I knew that I would have bad days but that I would also have many good days and still be able to live a full life with this disease. Sometimes I feel if I say what I think I might come across negative but I found there is a difference between being negative and being human. Obviously I have mentioned in previous blogs about how some things in my life changed for the better since my diagnosis but in the past few months I’ve come to learn, that the weight one carries around from living with a life long illness is hard and sometimes feels like so much to handle.
My MS diagnosis was very sudden for me and I’ve accepted it but I have found that the realisation of carrying around a diagnosis for life, is hard for anyone to handle. It hit me lately that the day of my diagnosis was so sudden and changed my life, usually when I got sick, I’d go the doctors and get a prescription of medicine to make me better. I’ve never gone to the doctors before and been told that they can’t cure me. I think this has a major emotional impact on myself and probably lots of others with MS too. I am thankful that medicine is so advanced now that there are medications and treatments to help slow down the progression and to help my symptoms but obviously it’s not as easy as a prescription to get rid of your disease. I really think it only dawned on me a few weeks ago that I can’t get medication to get rid of the MS and that I have this for life.
A lot of things have changed in my life since being diagnosed. Some things for the better and somethings that can make me feel very lonely. When I say I feel lonely, a lot of people might think, how can you be lonely? You have many friends and people around you. But in the past few months I have felt very lonely at times. I think that accepting and knowing you have such an unpredictable disease that you don’t have control over can really make the happiest person in the world feel lonely. As much as I know I have many supporting people around me, when my symptoms are really bad and at times somewhat invisible, it’s hard to not feel lonely, when you are in a room full of people and not one person truly knows what you’re experiencing. Because my MS symptoms are so unpredictable it’s sometimes hard to make plans and sometimes plans get cancelled and this can be depressing, when you want to meet your friends but can’t because your body is so exhausted or fatigue strikes really hard. Lately I’ve been experiencing really heavy legs and my legs have gone from beneath me and so in those moments of I’m going to meet up with people but I can barely keep my two feet on the ground, I feel lonely. At times, I want to do things and I physically can’t and this makes me feel so guilty, that I am letting friends or family down if I cancel or don’t follow through with plans.
I don’t even think its big things that make me feel lonely. It’s all the little things like dropping things, spilling things, uncontrollable shaking, tripping over my own feet, being tired, walking into things and not being able to get the words I want to come out of my mouth. Sometimes when I am sitting to eat cereal or my dinner and my hand keeps shaking it makes me feel like I am a baby that’s learning to feed themselves, I feel alone!! Not going to lie, Most of the time I find humour in it and laugh it off and make jokes out of it because sometimes it can be funny just casually walking into walls and smashing things by accident of course. When people make assumptions too and guess you are too tired or not up for it, without even asking, you can also feel lonely because they are not asking just assuming. I find that with MS if I experience one negative thing like loneliness or guilt there is always the opposite side of the spectrum that I experience.
So when I said I have experienced loneliness in living with this disease, I have also experienced the complete opposite. I have actually had plenty of experiences with people understanding or trying to understand. I have seen amazing people around me care for me and try to understand. I have actually had a few encounters with strangers who you end up talking to out of the blue. I met an older gentleman at a bus stop, I asked if he needed a hand, because he had plenty of shopping and bags and he was using a walking aid. He ended up chatting to me on the bus about his disability and we had so much in common and we had an understanding in what each other was saying. It made me feel like someone understands me. We had a conversation about our illnesses and how it’s opened our eyes and made us more aware of disabilities and invisible illnesses. It’s also great to meet up with others with MS because even though no one will experience MS the exact same, we all have an understanding and can relate to each other. I think a lot of people can relate to this blog, there are plenty of strong people out there fighting battles that no one knows about, whether its MS, other invisible illnesses, depression, epilepsy, having sick children, etc. I think that talking about it can really help and support groups because trying to handle everything on your own can be overwhelming and too much for one person to carry on their own. If you find a support group, you can chat to other people who understand and can share thoughts and ideas.
For anyone who knows a loved one with MS don’t be afraid to ask how they are, don’t be afraid to educate yourself on MS, educating yourself is always important and don’t just make assumptions without asking. If it’s me you’re asking, my answer is probably no, just kidding 😊 Thanks for reading xx