Accepting realities!

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acceptanceSomething that I have had a really hard time admitting and accepting is that Multiple Sclerosis is a disability. Whenever I have applied for a job, there is always that annoying question “Do have or have you had a disability.” I mean what kind of BS question is that to ask someone? Of course I want to say “NO”, but Multiple Sclerosis is listed as a disability on the darn application and I can’t falsify anything on an application because that could result in me being disqualified for a position I applied for and want. I think this is so invasive and completely ridiculous, but I guess it is what it is in life!

For some strange reason the words disabled and disability shatter my heart into aimages million pieces and cause me to feel like a useless failure . I do realize how irrational this may sound, but that is how I have been feeling. It made me incredibly sad when I had a difficult time walking through a store last weekend because my legs and feet were experiencing SO much pain and weakness. All
hashtag person not disabilityI wanted to do was cry, but I couldn’t because I view that as letting this illness win the never-ending battle we have been in for years and that will NEVER be an option for me!!

I know I already shared with y’all that I figured out I am gluten-intolerant without the expensive tests a doctor would want to run. It seems like a punishment to have to deal withlife isn't fair the issues Multiple Sclerosis comes along with and then add gluten-intolerant to the mix seems quite unfair. I know we all deal with random issues and keep on moving forward because we do not have a choice. I am also very aware that many others deal with SO many other struggles that are far worse than what I am, so I am really not complaining. I am going to share more about this gluten-intolerant situation in a later post.

tired.jpgThe truth is, because I am always so exhausted during the week after working 8 hours every day of the week, I often don’t have the energy to write as much as I would like to. I end up with so many random thoughts running around like crazy in my mind; it gets so hard to keep track of them all and have those thoughts come together for a good read and one that I am proud of.

For the past week or so, I have been experiencing an increase in the number of horrible do not confuse bad days as weaknessdizzy/black-out spells. I have had these issues happen before, but never so many in just one day. At least 2 days last week, there were several moments when the room went completely dark and there NO were sounds at all, which under other circumstances would be great. There was one time I was talking with a co-worker at her desk about work and all of sudden I felt weak, light-headed, hot as hell and dizzy. Luckily I was standing very close to the wall, which kept me standing upright. It might have been pretty embarrassing if I all of sudden fell to the floor at this new job.

I am not really sure which of these issues are more images (3)terrifying; dizzy spells, black-out moments or the combination of the two. Of course I would say the combination of dizziness and black-out would the most terrifying because you are dealing two different disturbing issues at the same time. I have dealt with dizzy spells for so many years now, but I have found ways that help me limit the duration of my dizziness, most of the time at least.

Truthfully my experiences with black-out spells aren’t plentiful in comparison to dizziness, but I have enough sense and knowledge to download (6)understand how horribly upsetting they can be. I remember a few years ago there was a period of time when I had a several short black-outs throughout the week, but they weren’t anywhere near as severe as they are now. I am not sure if its stress, lack of sleep, weather changes or something else. The list of possible reasons really could go on and on and on, but I really just wish they were STOP!

Thank you so much for stopping by my site today. I will never pressure you to leave a download (7)comment, but I do encourage your comments if that makes any sense, but I know your thoughts will be amazing. I promise to respond to your comments as quickly as I can! I hope you are feeling well and enjoying your weekend! Sometimes I think the best part of a weekend isn’t getting out and staying busy, but not having any plans at all so there aren’t any time requirements. My days are set in stone during the week with work, which I tend to strongly dislike, but I guess it is just the life of adulthood. I enjoy spending my 2 very short weekend days living in the moment and not doing anything that might cause unnecessary stress. Please remember that I am always sending y’all LOTS of love ❤, comfort and many positive vibes!

My signature heart

❤Always, Alyssa❤

88 thoughts on “Accepting realities!”

  2. I agree with you. It’s not fair to be asked that question, but … For insurance reasons that is why a company has that on most applications. WE Already know we are not OUR Disability, and WE go to great levels to show that is not what defines us. If people without disabilities only knew how hard we with disabilities fight, we’d get a promotion!
    (Okay, I’m calm now). LOL! I just woke up from a nap because I was feeling off for a couple days now. I woke up suddenly and downed a huge tumbler of water in less than 30 seconds.
    I do hope you had a pleasant couple of days off, and I really hope these dizzy/black-out spells cease soon. That is very scary.
    Are you drinking too much coffee? Do you drink enough water? Do you eat during the day? You have to be so very careful.
    You have an estimated 55 some-odd days before your insurance kicks in, right?
    All my love and support, Sweetie. 😊

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    • It is a pretty ridiculous question to ask people. You are right, people that live their lives healthy have no idea what a struggle it is to fight through every day!!
      I honestly do not and never have drank coffee. I try to drink enough water, but I probably don’t. I have started keeping snacks with me, of course that are gluten-free. At least I am trying though.
      What I am about to share about insurance will probably make you as mad as it has made me. Yes, that seems about right with the days, however it is a load of BS! Insurance for just myself every paycheck will be almost 1/2 my paycheck. It is SO insane! The person I interviewed with knew how important insurance was for me and never disclosed how horribly expensive it will be. I am going to continue to work at this terrible company, but only until I find something better, you know where I can afford insurance. I am beside myself with frustration right now and angry I wasn’t ever given the truth!
      Thank you for your kindness and support Beckie!

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  4. Alyssa, as you know I’m not a physician but I’ve dealt with chronic back pain and the anxiety that comes from pain. Therefore, a couple things as they may help.

    1. Dizziness if you’re not lacking food like empty stomach when you’re body is asking for it can come from stress. It definitely is for me even though I eat small meals often enough which is why I rarely get the dizziness. It can also happen with a tremendous amount of stress imposed on your body.

    For example, if you’re experiencing pain and/or fatigue (2nd point) ; that’s typically from your body working hard to keep you going through your day. Even sitting for short or long periods can cause fatigue because the body is working extra hard to keep you going. Bodies in chronic pain require meds. Make certain you’re getting the best doses throughout the day. Get up and walk and do child pose and then cobra. Go into a conference room and take care of YOU. Heck, I don’t get disability because that’s how screwed up the system is. However, if you can get even partial disability and work part time, you would still get insurance and, at least, give you something to do part time.

    You mentioned the pain in the store. Well sweetie, being strong doesn’t mean to hold your tears back and suffer. Being strong is a person that allows him or her to cry and feel your emotions. Don’t give a fuck about what anyone thinks, they are not living your journey.

    I hope some of these things help. As for gluten intolerance, I believe that happens with the necessary enzymes lacking along with stress. How do I know this? When anxiety hits, my stomach sometimes gets bloated and what’s happening is the intestines tighten up because that’s what stress does. If enzymes are lacking, some will call it gluten intolerance. Bottomline, my benzodiazepines are a lifesaver for this as it helps with my stress, anxiety and fatigue. Lorenzapam is the name. You already know I take tramadol for the back pain.

    I know I’m given you a lot here, but digest on your time. Hope it helps.

    Love, Emma xoxo

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    • Thank you so much for this incredibly brilliant information! I have honestly gotten much better about feeding myself. I bought of gluten-free snacks so I have something when I get hungry. During the issue with stomach issues I probably did lose weight, but I am trying to gain it back, well some of it.

      I honestly think that anxiety gets the best of me. I am trying my best to not stress about things and often just keep my emotions hidden, but it probably isn’t helping at all. Considering one of my doctors refuses to keep my same regimen if I have benzodiazepines, I am anxious way more without them and I agree with you, they can be a lifesaver!
      I know I am going to have some questions, but I probably should write them down before trying anymore right now. I am so thankful to have you as a friend and you are so full of great and helpful knowledge. Thank you again Emma!!! xoxox

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  5. Hey there! I’m not a doctor, obviously, so take this with a grain of salt; but your dizziness might be withdrawal from gluten. Gluten withdrawal is very real, and I’ve experienced it myself! Are you getting the flashes in your head? I had them when I went off gluten.

    Anyway, I wish you were feeling better! I totally admire how you work 40 hours a week, and to me, that is the opposite of disabled. The technical definition of disability (as the government defines it here in America) is the inability to work 40 hours a week, but look at you–you’re doing it! Rock on!!

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    • Thank you so much Meg! I appreciate your comment and your thoughts! Withdrawal from gluten would make sense, but I have experienced these dizzy/black out spells before which had nothing to do with gluten. I think it could be stress, fatigue, anxiety and or the lighting in the office. I haven’t had any flashes in my head, which I guess that is a good thing!

      Thank you so much Meg! I hate the Multiple Sclerosis is listed as a disability because then I feel labeled. There are different seventies of MS and I do not feel mine is there yet. Maybe it is, I don’t really know. I just know all the pain I get when I walk too much is discouraging. I really appreciate your friendship Meg!

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  6. I so wish I could reach out and give you a hug………I understand the thought of being disabled or labeling yourself disabled sucks, big time and i am sorry you understand that feeling too……..now with gluten intolerance, removing gluten from your diet will help you feel better but there will be a detox period and that can be kind of rough. be kind to yourself………you are more than worth it!

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  7. As I read your post, I am sending you healing thoughts and much strength. I hope everything will be okay. Sigh…I hate that you are experiencing black outs too…maybe it’s something to mention to the doctor on your next visit. Is it possible that you are too tired? Or is it a side effect of the med you are taking? Keeping my fingers crossed for you, Alyssa. Thank you always for your honesty with the struggles of MS. It cannot be easy….but I know you’ll pull through.

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    • Thank you so much! I am sure things will get better soon, or at least I hope they do. I did mention the spells in an email to the doctor, but we are 2 hours away from each other and I don’t have insurance right now. There isn’t much they can do about it. I think it’s that I am not getting near enough sleep, but that is something I need to work on. I appreciate your kind words and thoughts!

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  8. HI acceptance is really all we can do. I hate the word disabled, your disabled arnt you i get told…what is it?

    You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

    Yes sadly I am. I hate it. Always been a hard worker worked since i was 14.

    BUT if i am going to be given a label i am going to wear it with pride. I dont allow my disability to discern who I am. I keep going forward as well as I can. Yes I have to use wheelchairs and scooters and sticks but I use them knowing they are my aids in life to move about like people use a car or motorcycle or bus or train, my transport is inside my house stored in my closet or outside charging for its next days journey and adventures.

    Dizzy and black out you should have that checked. Is your blood pressure low? I get dizzy with my MS and vertigo too. I have blacked out its called Transient Epileptic Amensia….I go off for seconds or an hour or two make no more memories it is so freaky. But i dont black out per se. I think your black outs should be checked.

    Sending you a big hug. xxxx

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    • I do try not to ever allow MS to label me. I have always worked hard and did well with it. It does get difficult now, but I will keep fighting against it.

      I have had these dizzy spells before and they tend to pass. I think it is possible I am not getting enough sleep and I stay a little high-strung. I never knew what black outs were called, so thank you for telling me. Life isn’t for anyone, but we make it work, don’t we!

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  11. Those dizzy/black-out spells sounds really frightening–have you seen your doctor? Also, I can’t eat gluten either, but I’ve found some really great substitutes so that I’m at the point where I rarely miss it. I just recently discovered GF donuts that taste almost as good as Krispy Kreme!

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    • Yes, they are a little frightening, but I have learned how to handle them. My doctor does know about them and I am being forced to see her soon, which is before I will have insurance.
      WOW that is great there are donuts that are gluten-free! I am going to have to find them!!!

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  12. I feel for you Alyssa – the pain you must endure and the dizziness is just another factor. No one likes to feel like their world is spinning around and chance that they will fall. My mom had an electrolyte imbalance at one time and suffered bouts of dizziness. She was on a diuretic for swelling in her legs and the switched her to a brand that was not as strong. Also, she had low blood pressure that caused issues as well if she got up too quickly from a sitting or laying position.

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      • The blackouts I would find scary. Do you have a medical button that you wear Alyssa? A good friend of mine had a trip and fall back in November and had a brain bleed. It was a really strange accident. Her nephew came to visit her and he had a puppy. Her dog was excited to see the puppy and ran out in front of my friend and tripped her on the step and she fell and hit her head. She was hospitalized but they said she was okay. Then in March she passed out … she had to have brain surgery. This was an oddball situation, but she got a medical alert button and the old ones you had to push, this one detects if you have a medical issue. Ilene was in the hospital for brain surgery on March 4th – then in the hospital for 2 weeks, then a rehab place until April 10th (she lives alone and is in her late 70s or early 80s, I’m not sure, we worked together years ago and she was funny about telling anyone her age but the doctor didn’t want to send her home alone).

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      • They definitely can be a little scary, but I think it is possible it comes from lack of sleep. It is either that or I have a massive sensitivity to those lights at my job. I do not have an alert button and don’t think I need anything like that at this time. I am sorry for what your friend went through. I do hope she is much better now!

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      • The office lights are often harsh too – hpefully you can get caught up with sleep on the weekends if that is the culprit. So many worries for you. My friend says she is doing better now – that is very scary and she had to stay in the hospital step down/rehab place as she lives alone so they could monitor her.

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      • Yes, the lights are pretty terrible. It is fluorescent lights that always cause issues for me. Even when I am at a store, the lights cause crazy issues. I have done well with resting. I even stayed home from work yesterday because I was feeling awful.
        I am so glad your friend is doing better and hope she continues to improve!

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      • Well, hopefully you feel better today. I thought of you at the store today – buying yogurt and saw the probiotic yogurt and also I was buying Quaker oatmeal (old-fashioned in the canister) and saw a lot of different types of oatmeal in gluten free varieties. I think the manufacturers are catering to more people who follow a gluten-free diet these days.

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  13. I love how you have that picture with the dis crossed out in Disability whcih is why I will be removing the word disability from my page in December. That is exactly what I blogged about last year on International day of People with disability. https://all-hearts.org/2018/12/02/international-day-of-disability/
    I experience the same thing even when applying for jobs and even volunteer positions.
    You might also want to read this one I wrote about Autism. https://all-hearts.org/2019/04/02/world-autism-day/

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  14. Alyssa, I love your brave and honest posts. Then all of us who care about you, and your wellbeing can give you the love and support you deserve-just by being you.
    It sounds so scary to have the dizziness and blackouts. That would be terrifying!
    I have seen that they ask that question on applications now. I have filled out a few of those and had to sit there and decide the same thing. If I don’t put in there that I have a disability then Im lying on the app. It agree that it feels terrible.
    Keep being you ~ you are awesome! Get good rest today. ❤️❤️

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    • Oh my goodness, this comment was so incredibly touching. You actually brought tears to my eyes, but not out of sadness, more of pure joy! Your kindness and support mean SO much to me. There aren’t words that could express how thankful I am for your friendship!
      The dizziness and blackouts are not that fun and they can be terrifying. I have dealt with dizzy spells for a really long time and almost know how to react so they don’t last too long. The blackouts are another story though. I am just glad they do not seem to happen when I am driving and hope they never will!
      I am always honest on the applications with the “disability” question because I have nothing to hide. I am honest because they will find out at some point. If someone doesn’t want to hire me because of an illness, I don’t want to work for them!
      I am trying to take care of myself better. I even called out of work on Friday because of how awful I was feeling. I managed to do pretty much nothing all weekend long and that just wasn’t easy for me, but I did it! I really appreciate your kind comment Alexis and I hope your weekend was great!!

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  15. Hi, I’m new to blogging. Reading your post made me feel less lonely. Having Bipolar, had 2 strokes and diagnosed with vascular dementia, made me decide to share some of the good and bad before all dissappear. I don’t know you but lots of love to you as well 😊

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    • I am so glad reading my post made you feel less lonely. It is so easy to feel lonely when you feel that no one understands. The struggles you have gone through are very real and I am glad you entered the blogging community. People within this fantastic community are always understanding and never judge! I do know about what Bipolar can do to a person and it can make you feel like no one understands. I can’t imagine how terrifying it is being diagnosed with vascular dementia, but I think by starting to blog and write out how you are feeling in the present, will be so helpful for you in the future! Please know I am here for you and if you ever need to vent, let me know! If you would feel more comfortable, you can email me. My email address is alyssabowman81@gmail.com. I will always respond as quickly as I can!! Take care and lots of love to you sweetie!

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    • I like how you have it now, but I have a question. What are your goals for your blog? Are you wanting to write about your diagnosis and how you are handling it? It is just important to have the name be kind of leading and your focus, but that is just my opinion. Even though mine started off mainly about living with MS, it veers in other directions as well. You could make a list of names you like and the pros and cons to each. I am more than happy to help with this though! I love writing and coming up with random ideas!

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