This is So Not… “Fair”?

I am 26 years old. I learned LONG ago that life is not fair. Statistically speaking bad things have to happen to a percentage of Earth’s population, that is just life. But UGH! It can be so hard sometimes to not just want to break down and say “life is so unfair” because it’s not! No one ever said it was but it still makes me so angry sometimes!

I have MS. Things are not getting better and maybe they never will? I get that. But as if just waking up and going to bed every day was not hard enough (for me) I still have to stress about all the same stuff everyone else in life does. Lately, I can not stop thinking about a career path. If I ever want to actually start my life I need a career. Not just a job, a career. I don’t know how I will manage one or what I can even do but I know I have to find something. Every idea I can come up with has its own issue; can’t work in a hospital because I am immuno-suppressed. I can’t do something that involves moving around because my balance is so bad I can hardly get around my own house without tripping. I can’t work at a computer all day because staring at a screen seems to make my vision worse (nystagmus, oscillopsia, whatever this is). The list goes on and on and on top of that my fatigue is often so bad that I don’t want to do ANYTHING and if I can get myself up to try I just can’t focus! My cognition is just horrible! How can I work any sort of job that requires critical thinking when one minute I can assemble a computer and the next I can’t do the most basic of math problems? How will I know if I can do my job tomorrow?

It’s driving me insane because it seems I have tried every pill there is for all of my symptoms and nothing works! Like I have just given up on trying to fight my fatigue; Amantadine, Nuvigil, Provigil, Ritalin – nothing works or if it did it only worked for a short period of time. My doctor won’t prescribe any of the other things like Adderall because they are too habit forming but sometimes I just feel so tired (and desperate for relief) that I think “Hell, I’ll even try cocaine, just make it go away!”

I would give anything to see straight again but I don’t think this symptom (whatever it is) is ever going to change so I am just trying to learn how to function with it but man, it would be so much easier if I had some energy and was just a little alert! But I am just out of ideas and don’t even have the energy to seek a solution… And again, on top of all this? On top of everything else MS is making me live with? I need a job. I have to work just as hard to live as people with no health issues only I have the heavy burden of MS on top of me… If I only had a little more energy and could actually think a bit more clearly maybe I could solve the problem that is my current life.

What do you take for fatigue? How do you manage a living with Multiple Sclerosis? Share below? Any suggestions would be greatly appreciated!

18 Responses to This is So Not… “Fair”?

  1. Ben says:

    Fatigue sucks. We both understand that. It also hits hard when it does. I haven’t been hit nearly as hard as you have with MS (I was diagnosed Feb 2010 at age 20), and I’ve luckly been able to keep myself in shape physically in both strength and coordination. That won’t stop the inevitable in my opinion, but I’ve also been the one to take things as they come and do what I can to get through or work around it.

    What I do is, I try to stick to what I know are my limits while not being afraid to approach or even go over the limits (within reason, you do not want to push yourself too far, I speak from experience) from time to time. I work full-time, and if I’ve had a long night for whatever reason, I’ll make sure I get some coffee or something in the morning to at least help get me get through the next day without overdoing it.

    I don’t take much in terms of medication outside of Copaxone 3 times a week and B-12 once every 2 weeks. I’m not afraid to take other medications, but I try not to unless I REALLY need to (I would not be able to function without it). Again, your situation is different than mine. I’m sure I’d be on more medications if it came down to it.

    For suggestions, if I knew of a magic cure-all medication I’d suggest it, but the best thing that comes to my mind is to take things in baby-steps. You want a career, what kind of job are you looking for? Is there anything pretty simple you could at least do Part-Time to help get started? You know your strengths, are you able to use those? Where are your limits?

    Also, physically, I’d see if there are exercises you can do to help build strength and coordination both physically and cognitively. It will be hard I’m sure, especially at first, but I’m sure you could push through and when you look back, you’ll be glad you did. Even if you had another relapse or something down the road, I’d hope the exercise could get you back on your feet quicker. I know I don’t exercise as much as I really should myself, but I at least try to get one hard workout at least once a week which builds strength and coordination physically.

    This sounds like a lot, and some may even sound impossible, but I wanted to share my experience, and hopefully what I’ve said will help even if it’s just a little. The biggest thing I know pushing me is perseverance. I come from a stubborn family that will NOT back down easily. It takes a lot for me to back down from a goal of any kind. You seem pretty determined yourself, so I hope that if you take any of these suggestions, you persevere through the fatigue, pain, bad cognition or whatever. Do what you can to strengthen or re-strengthen those areas, and get through to fulfilling your goals.

    • Thank you for the comment! You have brought a few things up that I will be thinking about now, mainly starting off slow with part time work but I still am not sure with what. Over the years I have wanted to do something medical-related, it’s what I have come to know and find interest in but now it’s hard since I did Lemtrada, I am supposed to be AVOIDING being around sick people not trying to be at ground zero for germs every day! Even so, if I do not ever get better, since this is how I have been for almost 2 years, maybe someone who can barely take care of himself should not be around ill/injured people who might need me to help them! I need to try to work on learning something new and finding interest in something new to maybe open up new possible career paths because right now I am just drawing a blank.

      As far as exercise I have been trying to come up with some sort of basic “routine” to get myself moving and soe days I CAN but most the time if I can get myself up to write or reply to comments THAT is an accomplishment! I mean I can be hungry but feel so tired and dizzy that I won’t go downstairs to eat because it seems like TOO MUCH of an endeavor.

      I really hope I see some improvements in my situation over the next couple of years because I feel so… useless? It’s depressing. It makes me angry! This is not who I am supposed to be! I just HAVE to figure something out!

      Ugh, sorry, but thank you,

      • Ben says:

        I can understand the difficulties with the part time work especially in medical. Is there anything you like to do in your free time when you can? Maybe there is something along those lines you can find if medical or something medical-related (like a job that is medical-ish that doesn’t involve being at ground zero like you said) won’t work. I understand those big goals that may seem lofty and far away, but as long as you keep making even little steps toward that general direction (it won’t be a straight path. I can speak from my own experience), then I believe you will land something you can do and enjoy doing.

        I also encourage you to try pushing yourself a little more. I believe you already push yourself a lot, maybe even more than I push myself (which is a ton, I won’t go into details here). The next time you’re hungry however, even if you’re feeling really tired and dizzy like how you were saying. Think about the good you’d be doing for yourself by making the effort to go downstairs and eat, and allow that to motivate/drive you. You won’t have to make a big meal or anything like that. You can just keep it simple, and you can go downstairs at your own pace. Take it slow if you need to.

        It will be hard, I understand that. Just remember while going downstairs that you won’t be hungry anymore, you’ll have more energy to function and it’ll be an accomplishment well worth the effort.

        You can keep that in mind for other things as well. Yes, it will be hard, but ask yourself if the good that comes from whatever it is you’re trying to do is worth the perceived difficulty. I understand your frustration. It’s hard when even the simple things you took for granted at one time seem like they require a lot of effort if not even become near impossible to do now. You want to see improvements, start by taking control where you can and try to make those improvements you mentioned real even if they’re only small ones in the beginning.

        I hope this helps you.

        • Honestly right now I am just making baby steps trying to figure out what I can do. Yes, I have been pushing myself to do little things like doing the dishes for my parents. Going downstairs was just an example of me on bad days, it’s been nice and cool out lately so yesterday I started pulling some weeds in a small patch of dirt in the garden, didn’t get much done but much more than if I had done nothing! Thanks!

  2. Anonymous says:

    I have a great idea .I’m going to email it to you on monday .

  3. Anonymous says:

    I’m on Lemtrada and I work at a hospital; it’s not impossible

  4. John says:

    Hey Matt,

    The first time I visited my local chapter of the M.S. Society, I was warmly greeted by a lady who worked there and she informed me that, she also had M.S. If anybody could understand what you go through each day it would be them. You’re an articulate man and empathetic to our struggles. It might be worth a try to visit them, even as a volunteer which could turn into a full time, or part time gig? Just a thought…

  5. Anonymous says:

    This isn’t a very exciting suggestion ,but it’s a start.One time we went as a group to one of the movies at 9.00 am .It was special effects with a big discount and we had a lot of kids with us .The young guy who took the tickets was very disabled in some special wheelchair .Look for something like that part-time ,while your trying to come up with a plan.It will get you out of the house and a little money in your pocket while your doing the next lemtada and then starting the ocrelzemab. Then, when your in better shape try a better job.

    • Well, that would be good if I wasn’t already making “part time” money from home online, so I really need to work on “the next step” as in long-term career goal. something I could support myself on enough to actually move back out and get a place and all that fund stuff…

  6. Christine Ridge says:

    Hello Matt. Greetings from Portland, England. You may recall me from spring 2015 when in desperation I contacted because your blog sung out to me as I was experiencing everything you were: including MS Hug! I wasn’t completely convinced I had MS, but in lieu of there not being any other quanative answers, I was investigated for this in October 2015. Hoorah! No brain lesions. So why am I struggling to live? March 2016 I proved I had PoTS, and demanded referral to a cardiologist. June 2016 the cardiologist confirmed dysautonomia, PoTS, and the primary diagnosis of Ehlers Danlos Syndrome Hypermobility Type 3. Hoorah again! Now I know why I feel as if my whole body is falling apart. In March 2016 I began with 4 teaspoons of salt a day. By May I had enough energy to shuffle with my sticks to the end of the road unaided. June I cooked my first family roast meal in 16 months. Took me 3 days to recover. If someone had told me last year that SALT would energise me, I would have scoffed. Yet it has – amazing. Now I actually have a plateau on which I can pace myself. Lying in bed for the vast part of 14 months, was infuriating as everyone, including UTube, telling me I needed to pace myself. 70% of days I was struggling to get up to use the loo!!! I hope you, or other MS sufferers, do not view my comment as the equivalent of, “Are you taking vitamin D?”! That has infuriated me too, including a neurologist and rheumotologist, telling me upping Vitamin D will cure my internal shakiness, numbness, pins and needles! TOSH! I have complete contempt for every doctor who cruelly allowed me to deteriorate over 3 years, without any interested attempt to try and restore my ability to live. Thank God for the faith of my fab husband and 3 children. Tuesday I return to the specialist for effective PoTS medication, besides salt! Then I need to be referred for treatment for Mast Cell Activation Disorder, Thoratic Outlet Syndrome, Cervio Cranial Instability, and Chiari Malformation.
    It is distressing Matt to read that you are struggling for reduction in all of your disabling symptoms. Seek and ye shall find. Keep the faith. Gentle hugs from across the pond. Christine Ridge

    • Wow, so glad you seem to have found “an answer”, seems like you are doing much better. Yes, I am still looking for my answer, it’s a neverending endeavor and it’s just so tiring but what else can I do? Thanks!

  7. Brandy says:

    I just stumbled (pun?) upon your blog today and just wanted to say thank you for sharing your experiences so openly and taking time to create this website to help others going through similar battles.

    I am 26 as well and was just diagnosed with MS a couple weeks ago. I feel all of these same feelings as you. I HATE MS

    • Matt Allen G says:

      I am glad you find this site to be useful! Hit me up anytime if you need to chat about anything! My social profiles are on the top right of this blog so I am sure at least one of those will work for you

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