Of all days, it does not seem right to feel down on a Saturday. Saturday is supposed to be a happy day, because we do not have to be at work. We are supposed to be doing the things we were not able to do during the week, but I have absolutely no energy today. This post will be unlike all of my others, where I always try to put a positive spin on things.
I think I am feeling so darn negative, because I have been dealing with so much additional pain for a while now. I guess I am scared of what else the future holds for me. Multiple Sclerosis is so unpredictable, and I do not like the unknown. I do not feel like
MS is at all controllable, and that drives me crazy! I think it is quite obvious, I might have some control issues, and MS is not cooperating with my ideas of life!
For some strange reason, the Nurse Practitioner, believes that I have some kind of infection. I can not imagine that I have had an infection, that was not discovered for years. I mean seriously, if an infection was causing my back pain, how and why would it have not been seen prior to now? I see at least one doctor every two months, and have blood work done frequently, so why would it really take this long to figure it out?! I have NOT had any symptoms of any infection, at all. My temperature has always been normal and my blood pressure has spiked because of the pain and or stress. Please, tell me if I am wrong, but I think I would know if I had an infection of any kind!
I really hate Multiple Sclerosis, because I do not think anyone knows much about it! Yes, MS has made me a stronger person, but it has caused so many negative issues as well. This disease, initially caused me shame and thinking that I must have done something 
wrong to deserve this. I was a 19-year-old girl when I was diagnosed, what could someone who age do to deserve a lifetime of pain? I am incredibly frustrated with having questions that do not have answers. People once said that this was a genetic illness, but no one in my family has this! Some say that heat causes it to be worse, which I do believe, but only because it makes me feel worse. But then again, my husband, who does not have MS, heat bothers him in a negative way. So how can anyone say that and be 100% sure heat would not affect me that same way if I did not have MS? Stress bothers everyone, so how can you say it affects those with MS more?
I hate having to say, ” I am okay”, when I am really not! I put on a strong and happy face most days, even when I hurt! I do not want anyone’s sympathy or special treatment, I just want to be normal! I feel like I have to be two different people sometimes, the real me I am at home and the me I am in front of people. I really hate having to adjust my life to how I am feeling at any given time! I had to miss time from work because the pain was too much to deal with. That is not fair to me or even my co-workers. Sometimes, you can
not fake your way through. As I told you already, I am very real with y’all and do not sugar coat how I am feeling, but sometimes I do hide my true feelings in front of those that may judge and or just not understand. Thankfully, when I am home with my husband and cats, I do not have to hide behind my strong face and can be vulnerable, they are understanding! Deep down, I know that things will get better, it is just hard sometimes to believe that. I constantly have to remind myself that these issues are temporary and life will get back to be as normal as possible someday. I am trying to stay positive and not dwell on the negative things I am experiencing, but everyone no matter how strong they are need to let it all out sometimes. I keep telling myself that does not make me weak, just human!
Thank you all for reading my semi rant! I have had a difficult few weeks or so with a lot going on in my life! I just want things to be normal and happy again! I appreciate all of your support and great comments. Please let me know what you think about all of this and what do you think I should do! The medicine has been giving me a hard time but I know that is all temporary, so I am not all that concerned about that. I am just taking things one day at a time and hoping for a good outcome! Tomorrow is a new day, which will be better. I do plan to do my nails and toes tomorrow as I did not go out today for that because I was just too tired! I hope you have a great night and are able to relax and enjoy your Saturday.
Always, Alyssa
Fightmsdaily 
hey, I am sorry you are feeling down. I read your post with interest because you reminded me, if I dare say, my younger self. I too wanted to be “normal”, to not be in pain or have mental illness. I was struck with a severe back injury when I was 25, a little older than you were when you were diagnosed with MS. It’s tough dealing with pain all the time and I understand the 2 faces deal. I wish we didn’t have to do that. I still do because my depression gets so bad and I don’t want my family to worry so I only be myself when I am in my room, alone and with my voices.
About the infection, I have a friend that is in Canada. She firmly believes that EBV, Epstein Barr Virus causes MS so that maybe the infection your nurse practitioner was talking about. No one really knows the link. Some say vitamin D deficiency and I am sure there are a myriad of other theories. I really think it is some sort of immune disorder as well, but that is the info that I get from my friend, who has no experience in the medical field other than what she has learned from her various issues.
it’s always good to let out the negative feelings. You can’t keep them bottled up inside. It will make things worse, trust me on this. Also, be gentle with yourself and try letting go of the “normal” stuff. You can’t go back to your old self, as I learned when I was forced out of work at age 36. I had to grieve and am still grieving the loss of my functions that everyone else takes for granted. I wanted to do a lot of things today but I was only able to make 2 simple meals and shower. No reading, no baking cookies, no vacuuming the rug. I think the more we struggle with trying to be “normal” the harder it hurts when we can’t do the “normal” You aren’t alone in your pain. Feel free to contact me via my contact page or blog. G
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HI Alyssa, I know it is hard because some days all you want to do is scream. I hear ya! I have had MS diagnosed for 12 years and some days just suck. I know that my clinic always needs to rule out an infection as infections can cause ur symptoms to flare BEFORE they treat me for a relapse. The way I figure it is I would rather have a normal round of antibiotics than a huge dose of steroids to stop further damage. That’s how I have to navigate through it in my mind. I oo am blogging – not always about MS but a lot of times it is! Feel free to check it out if you want. Keep you chin up, tomorrow is a new day! Raegan
cookingincowboyboots.com
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Oh I would definitely prefer antibiotics than steroids! Steroids make me mean! It is so hard living with MS and it is so frustrating!! I appreciate your kind words and understanding! I am trying to keep my chin up, today was just one of those days I wanted to cry, scream and yell! I hope you have a good evening!!!
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OMG I wrote you this long thoughtful response and WordPress got rid of it so I’ll try to remember it…
It’s okay to have a bad day. You need to let the negative stuff go sometimes or it will just build up. It’s hard dealing with pain every day and wanting to be in control of an illness that is unpredictable. I get it because my CRPS is unpredictable. I never know what kind of pain I will get, if I will get it, where, how long, etc. It’s awful. You remind me of my (dare I say) younger self, wanting to be “normal” but not quite sure what that is. I don’t think anyone really knows.
I think your Nurse practitioner was right about the infection. I have a friend in Canada that thinks MS is caused by EBV, Epstein Barr Virus, though no one knows for sure. I also think it might be some sort of immune disorder. But there are a lot of theories ranging from vitamin D deficiency to others. I used to know them when I worked as a medical assistant and was kept abreast of the various disorders. Now I am just disabled and it’s hard.
Try not to be so hard on yourself for not being “normal”. I think grieving the old you will help in the long run. I am still doing that because my functions are slowly being taken away. I wanted to do so much today because I was feeling good until I made breakfast and coffee. Then showered and it went downhill from there. It’s hard living with a chronic illness that brings such pain.
As always, I am here. Just reach me through my blog or contact page. G
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The only reason I think she is wrong, is because of the type of infection she is saying. I will reach out on your contact page, because I don’t want this to be all that public!
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Oh Alyssa, no pun intended but I FEEL YOUR PAIN. All I could blog today was a poem.
It was just absolutely unrelenting. I know how you feel -we should always say we are fine so that we hear it and believe it too. But often, this disguise makes me feel far away and isolated. I had feelings of not wanting to be around to see my old life rot before me. I have a 12 year and I’m her only-if inadequate-mother. I don’t want to tell my husband about any of the inner torment. I believe he has become resentful and I even suspect he thinks I’m partly to blame. We’ve never really gotten along but now I feel like a bird in a cage. Thanks for sharing candidly and thanks for listening without judgement. 🙂
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Oh goodness, I am sorry for what you are going through. You definitely an inadequate mother, you are dealing with something difficult. You should not have to feel like you can not talk to your husband. That just isn’t the way marriage is supposed to be. He should be supporting you and encouraging you. I honestly sometimes feel my husband my be resentful as he has pain too. But, it does seem like whatever I say is hurting, is hurting him. I would NEVER judge you in any way shape or form! Please know, you can always chat with me. You can email me personally if you want! I am pretty good at responding fast! I am here for you my dear!!!
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Thank you:)
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It is my pleasure!!!!
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Do you do hashtags to draw more people to your blog?
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Please do not think I am stupid, but I really do not understand how to hashtag. This is making me sound so old, like I have been living under a rock:)!
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What I like and appreciate about this (always trying to see a silver lining!) Alyssa, through your openness and honesty you’ve brought others together via the comments… and just knowing we are not alone, there are others struggling each day, to function, to smile and be an inspiration…when they are suffering great pain and particularly fear… fear about the future and what it holds when one has a debilitating illness thats only going to continue to sap our strength as we get older… its OK to express all of this, I believe in the expressing comes a sense of release and that in its self is healing… Just keep writing and know that.. ‘this too shall pass’ In love and light …
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Thank you SO much for this wonderful and beautiful comment!!! I am trying to keep writing not just to help myself through difficult times, but to help others so they know they are not alone! It is such a terrifying to journey, especially when you think that no one understands. I will not lie, sometimes being positive takes so much strength but it is the only way. Yes, yesterday I was really down and today I am not 100% yet, but this blog has done so much to help me!! I appreciate you love and support!!!
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I understand. Totally. I try to hide my illness from my daughter and I don’t disclose much at all to my his a. Because he tends to use things against me later–not to mention, I think he is very resentful of the limitations my illness presents. I feel so alone and so isolated and I don’t want to even trouble friends because it seems like it’s a new thing every day. The other day my ear became numb and tingly-impossible to ignore-but I sound like a crazy person sharing this with friends. I wish I could live with someone that understood and felt empathy and compassion. I, too, feeling scared and alone.
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I am so sorry you feel like this. You need someone that can be respectful of your needs. You don’t sound like a crazy person m you sound like someone in pain. I am always here for you. You can even email me, so it is more private, if you want to. I wish there was more I could do! Love, Alyssa ♡
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Epstein Barr totally agree. Have you read Medical Medium???
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Oh no, I have not read this. You think I should check it out? Stupid question, is it a book?
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Omg yes!! It’s all about autoimmune and Epstein Barr. Popular you can get it anywhere 🙂
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I am going to try to order it off Amazon. I like to read the kindle versions because if I didn’t I would have WAY too many books!
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Love hearing your thoughts about your life and having to act like everythings ok in public when its really not. I can sure relate to that. Also i learned a little more about ms and how we dont really know enough about it. Best of luck!
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Thank you KatYa! MS is not any fun but I have to do what I have to! I am glad you are loving hearing my thoughts about life. I hope it is really helpful to you!
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Appreciating the time and effort you put into your blog and in depth information you offer. It’s nice to come across a blog every once in a while that isn’t the same outdated rehashed information. Excellent read! I’ve saved your site and I’m adding your RSS feeds to my Google account.
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