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Feelings from a lonely soul

Sitting recalling events from a lifelong passed, I wonder how life became so cold, almost unbearable. My words and thoughts are rarely heard by others. Only by writing, can I feel truly free without judgment or criticism. Pity was neither welcomed nor needed, only a familiar face that was a close friend. Long days and even longer nights, have allowed me to reflect on memories of happier times.

I had an abundance of friends, was fearless in groups, and always ready to meet new people. You never anticipate the loss of a personality trait, the realization of your new reality leaves bewilderment and fear. Fear of never regaining the zest for life and confidence once held, wondering if and when communication and laughter would flow so effortlessly and meaningfully as before. The ability to connect with others seems daunting even impossible. I struggle daily to convey my thoughts verbally, as I'm ashamed of this fearful, feeble, weak person I've become. Unrecognizable passing time until I'm reborn, and ready to start living! Self-acceptance was never my strong suit, but I'm trying.

All of my girlfriends are mothers now, and busy nurturing their children. I now have phone friends, since most have moved far away. I've been on long term disability for eleven years now, so meeting new people, and socializing is foreign to me. For many years I didn't want to leave my house, because I felt so horrible with the devastating effects of Multiple Sclerosis. Now I feel better than I have in years, and wanting desperately to feel comfortable in social situations. I feel like I'm the new kid in school, who has zero social skills and drowning in her fears.

This is a turning point in my life, as I need and desire the interactions with new people. I should be amazed at how far I've come, especially when considering where I've been. About five years ago my words were very muffled and inaudible. I was tired of my friends and family, asking me to repeat myself. Not talking was just a better option, or one word answers that were guaranteed not to require more explanation. I knew at this point spoken words, we're difficult to say, let alone my word processing and retrieval were noticeably impaired. I spoke very slowly, and I was frustrating to others who were obligated to listen to me. I basically could not carry a conversation, so I lived like a hermit in solitude! It felt like I was imprisoned in my own mind, speaking to select friends, family and my husband. I understand that I was stubborn, it's a wonder that the remaining people didn't give up on me. Like the saying goes, "you find out who your true friends are, when going through the toughest times"! That is very true, just hard to accept/understand.

Now I'm finally feeling better, needing and wanting to revamp my friends and start over. It's going to be the hardest to overcome my comfort zone (my home), but I'm tired of the same daily routine. Change is seldom wanted, but in this case required. It's time to start living again; I'm just not sure where to begin. Trial and error will be my new normal until I can feel comfort in my own skin.

This is challenging, being 40 and realizing that everything is new and different than before. I never understood people with Multiple Sclerosis that say, "I have MS but MS doesn't have me". In my case MS has had me for the past 11 years or so. In all honesty, I feel MS has definitely changed me. I can't say for certain if it's a good or bad thing, just different. I can say, I have experienced true pain and impossible situations, but I'm stronger for it! My life is very different than the way I had envisioned it, but I really believe its how you handle negative situations that will make or break you.

Yes I would have loved to have kids, and that feeling of life growing inside me. Realistically, MS has stolen that opportunity! I don't want to admit this, but that is my one wish, that I could have been a mother. Adoption is the only way, but my own biological child is out of the question, since having had a bone marrow transplant. It was done to halt the progression of MS, a decision made, at the time, as it was my only alternative. I guess I can't blame MS for the inability to have a child, in hindsight I would have protected my eggs for future use. I am very grateful for having had the BMT, but sad that I will NEVER have any biological children.

That contributes to the loneliness I'm so familiar with. I am slowly dealing with my emotions surrounding my biggest hurdle; loneliness! I never anticipated being so young, and being in a wheelchair. Reality is people do not want to associate, socialize, and let alone being true friends with a person in a wheelchair. That's been my experience. I don't understand how so many friends I held for years, progressively dwindled as my MS progressed. It is challenging to reveal these feelings I buried for an eternity. I thought things would change, but nothing has! I'm brutally honest, as I know that these feelings are all too common among wheelchair users. I try focusing on the future, rather than being stuck in the past. Only facing my truth and acknowledging my faults, will things change.

The first thing I must change is my perception of who I am. I will not accept MS as being my fault; it’s only my reactions to my unique circumstance that are my "fault". MS will always be a part of me that will never change. Today is a new day, where I promise to live the life I want regardless of my diagnosis. I will stop apologizing for my health and things I can't change, I will choose to say I can and I will, I will set new goals starting today, I will not sweat the small things and be grateful for what I have. I will learn to laugh again, and feel comfortable around others. I will stop thinking that others are judging me, some might but I will not care. I am me and I embrace the future, with MS being as my sidekick, rather than MS defining me as a person. For all the naysayers out there, never assume I can't because that just fuels me even more.

I consider myself to be an advocate for the disabled and strive to make every day count. I am not perfect by any means. I'll have bad days (like everyone) but make it my mission to carry on living the best life I can. I choose to be happy, resourceful and independent. For many years I lived like a hermit, but those days are gone. I am truly living, creating/inventing to hopefully make a positive impact on the world, specifically with disabled individuals.

Currently I am working on an accessible, functional swimsuit line called Advanced Freedom. Swimming is my absolute favorite activity. As I progress with this disease, I realize that swimsuits were definitely not created to include all abilities. I've had bladder issues from the onset of MS. The typical one piece swimsuit is just not practical to dress/undress, especially for a disabled individual. When the swimsuit is wet, it creates an almost impossible task when needing to use the washroom. Since I go to the washroom frequently, one piece swimsuits presently are just not an option. Once all women reach a certain age and/or having had children, coverage of the mid-section is of top priority. Shouldn't there be an accessible one piece that provides coverage, while accommodating the need for going to the washroom?

To tackle this issue I've invented a "one piece, two piece swimsuit". It's a beautiful one piece swimsuit that is actually two! The top and bottom portions are held together by magnetic buttons on each side of your waist. The magnets are waterproof so chlorinated or salt water doesn't affect the strength or condition of the magnets. It works beautifully and can be worn by all women. Women of all abilities, sizes and ages can now find their one piece transformed into the new, more convenient, two piece. Unlike regular tankinis the swimsuit will not ride upwards in the water. It is considered a one piece to everyone else.

Tankinis can also stay tankinis with the magnets going down the back/side of the upper portion of the top. It resolves two problems, one being it keeps the tankini in position when in the water, and two being more accessible for people who cannot raise their arms over their head. It also adds an extra element of style to existing tankinis.

It is my mission to make disabled people feel more comfortable in their own skin, while feeling included in society. I'm starting with swimsuits because I feel disabled people have been forgotten when designing bathing suits. It's especially close to my heart, as I myself almost gave up on a sport I loved so much. Not to mention the benefits of swimming for a disabled person.

It is also a project that I will be proud of, regardless of my circumstance. Multiple Sclerosis has not and will not change my mission in life. While loneliness is still my biggest hurdle, in time I hope that changes. I think through making inclusion a priority, things will fall into place. Society as a whole will not change, if there aren’t people with disabilities fighting for the greater good.

It's all about trying to keep busy, and providing something that will help others. The swimsuits are only my first idea, my thoughts are never ending. Others won't hire me, so I'm hiring myself. If it can help me, it will help many others in similar situations. Life has altered my initial plans, but I'm creating new ones. Life is not measured by suffering, but rather by giving your outlook and positive reach to others.

  1. I feel like I was reading my own thoughts, like you said everything I feel but can't put into words. The social isolation and financial strain are debilitating. I too want to move forward with control over my emotional responses. I don't leave the house because I don't have a car (THANK GOD I don't have mobility issues- just financial ones). I left 3 times in the month of June. My husband drove me and I came straight home. When you are locked away from the world you begin to think that you should stay home even when you get a chance to leave. You doubt your ability to interact with the world because you aren't you anymore and you can't predict how you will react to minor stressors.
    Thank you for your honesty I feel so much less alone knowing that not everyone can stay positive in the face of so much loss

    1. Good to know l am not alone feeling a lonely soul

      1. Hi Louise! Your title drew me to your post and it brought up feelings I try to fight almost daily, Tho I'm married, I am alone most of the time and I've always been okay with being alone thru different phases of my life, but when it turns to lonely, it's rather unexpected and unwelcome. It can become just painful. I want so much to have a purpose in life again, to feel necessary, useful, important enough to be taking up space in the world and not feeling like I'm just part of the furniture.
        I've thought often about finding a support group but I've become so introverted with other people I wonder to myself "who Are you?!" I barely recognize myself. Chit chat is exhausting. I've never been just a surface level person, preferring to actually Learn something. I'm a good listener, but not so much a very good talker anymore. Actually speaking and in the midst of a sentence, not only unable to drudge up the word that comes next, but mortified that I don't know what I was saying or what the conversation was about. It's even worse when you realize no one was paying attention anyway! I don't have that kind of energy to waste.
        Something has taken away my desire to action, to get up and do, to accomplish something besides managing to have made the bed! Ultimately, what was it that finally moved you to action? Your WILL affirmations. Did it come to just making a decision that you Will do and act and say and live, and have you had to just do that daily to keep yourself on the track you want to be on?
        I admire that you came up with your swim wear and since it's been over a year since you wrote, I wonder what you're doing now, how you are, what's up with Advanced Freedom! Thank you for the thoughts you shared--they're important. I will your words to ignite something in me!

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