Fading Hope

Hope lostI feel as though I am slowly starting to lose hope that my leg issues are NOT going to come to a much deserved end! I have been dealing the pain and spasms at their worse for well over a week now and I am just really ready for a break! I know that may sound like I am just giving up and letting these issues win, but I am really not, I am just way beyond FRUSTRATED! It seems that in the past when I had these issues they subsided much faster than they are now. All I can think is, I am getting older so my body is going to take a lot longer to heal. I do not know if this is a real thing or not, but it is all I have to go on right now!

Just walking around our house feels like I am running a marathon and our house is not that big! When I am doing laundry, I have to carry the clothes down stairs to where the washing machine is and then carrying the clothes back up the stairs once they are dry to put them away. Logically that might wear anyone out, but right now for me it is tormenting my legs and in turn my back as well! Besides doing my normal things like laundry, grocery shopping, taking care of my sweet cats I am trying to rest, but the spasms and pain are still here with what seems like NO end in sight! I highly doubt my aggravation is helping at all, but I just really can not help it!

Let me also be completely honest with y’all, I have not informed my doctor of these issues because I do not want to hear what she might say! At that point with these issues that will not vanish she may insist even stronger I get an MRI, which will probably shed light on news I do not want to hear! Sometimes being a little ignorant to the truth infertility-card-losing-hope-not-optionhelps me not think about the troubles right in front of me. Considering I have had MS just shy of 18 years, I know in my heart and mind what is happening, but having a doctor that I do not care much for or ever agree with confirm my suspicions is  just not something I am ready for. Call that childish behavior or just being too stubborn for my own good or whatever else this might be, but I do not deal well with the constant disappointment of this illness. I always do my very best to just turn a blind eye to things I wish were not happening and hope they will just go away when they are ready! I think that MS sort of has a mind of its own and will do what it wants whenever it wants to without consulting me ever, which is just a little rude and mean!

I know how crucial it is to never give up hope❤ as it is something that is vital to our lives, but right now it is a little hard for me. I often feel like I have been fighting a battle that losing-hope-quote-1-picture-quote-1does not end and it is not ever easy! I also know how much staying positive can change our lives, but that positive attitude when it comes to all the pain and spasms I deal with is fading relatively  fast. I guess the reality is the pain and spasms are either permanent and I will learn to cope with them or some magical day it will ease up allowing me to feel as “normal” as I can! The real truth is what I am going through right now could be so much worse and other people are dealing with way more than I am so I really do not have much to complain about! This is all just frustration and wanting more than ever to not have this pain anymore because it is effecting my life, daily!

❤Thank you so much for visiting my site today. I am terribly sorry that this post might have been a little more negative than I normally am, but I guess we all have those days and it is okay because things will get better in time! I encourage your amazing comments and I promise to respond just as quickly as I can, your thoughts are so important to me. I hope you had a lovely weekend and I hope your Mother’s Day was very special! Never forget that no matter what I am dealing with, I am always sending you lots of ❤love and comfort!

Love 2

Always, Alyssa

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49 thoughts on “Fading Hope

  1. I particularly liked this post because of its honesty and its emotional aspects. This is definitely a good read. Inspiring and brave. I hope you could also follow my blog page, if you don’t mind. Cheers! 🙂

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  2. As long as you are breathing, there is HOPE. I know it’s easy to say don’t give up but don’t . I have experienced pain for sol long that if it’s not there, I wonder what’s going on. You are stronger than you think. Hang in there.

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    • Thank you so much for your sweet comment with so much encouragement! It is funny because like you if I am not in pain I wonder what is going on! If I did not have any pain at all, I think I would have to consult with my doctor. Pain just becomes normal! I hope you had an amazing weekend and again that you for your support!

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  3. Don’t lose hope chickie. I was right there last winter. While it’s frustrating and a bit nerve racking you WILL get through. It WILL get better. Not sure if mine actually got better or if I just got used to a different level of pain. Either way I’m doing better than last winter. Hugs and prayers sent for peace and well being.

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    • Thank you Alex! I know giving up hope is not the best plan, I am just so frustrated!! The pain and spasms are driving me crazy and that is a pretty short drive! It is amazing how much we get use to different pain and other issues. Some things just become our “norm”. I hope your Mother’s Day was amazing and I hope you are doing well today! I hope you have a very lovely day! Thank you again for your comment, I do truly appreciate you!!!

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  4. Thank you for writing about your negative feelings. I hear you! If we don’t share these things we can be in denial, which is dangerous, for me at least. And if we don’t have frustrating periods, we may not be human. I like knowing that you’re human because it makes me feel okay about being the same. I hope your discomfort subsides. Remember, you’re not alone.
    Aunt Martha

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  5. Thank you for this post! Remember, any time you feel the need to complain or be a bit negative, we will all be there to read, listen and support… because it’s human. We connect even more with those who have bad days along with the good, because it’s real! I know you have better days to come. Just hang in there and don’t be afraid to tell it like it is and be yourself. I am thinking of you and sending good healing energy your way. xoxo

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    • Thank you so much for your comment! You are the first person all day to understand and actually make me smile there may have been a few tears as well, but they were happy tears. I used to hate admitting to the bad days and negative feelings, but you are right we are all just human! I am working on hanging in there and knowing things will get better, it has just been a difficult time. Thank you so much for your kindness and understanding!! xoxo

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  6. I’m sorry to hear your leg problems are still being a pain – and literally!. Positivity. I’m all for it, but I, and we are only human and we are allowed to break. This is being strong in my eyes!. Regards to telling your doctor?. Like you mentioned, you’ve had MS for 18 years and you know what’s what. I don’t want to tell you what to do, as I probably would just carry on also in the hope everything will settle down!. I wish you a happy week. You know where we are if yiy need us!. Sending you lots of virtual healing and smiles. X

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    • Thank you so much! I am finally okay with not being okay and positive sometimes. I think people that try to act like that all the time are not being real and that isn’t helpful to anyone! I do know what is what and I just do not care for my doctor because she has NO bedside manner at all! In your opinion, am I making a mistake not telling her about these issues? I do not want to do steroids and I do not want to switch meds again, so what else can she do for me, right?

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      • Ok. My own personal opinion. I had a bad relapse in November which freaked me out, as I was losing strength in my left leg. I could still walk, but not the best. I spoke to my MS Nurse and I also got signed off work for 2.5 weeks. The rest helped, but even though the leg feels better, it is a little weaker. So, I did go to the doctor, as I wanted to get signed off and rest it out. I don’t know how bad your leg is?. In your gut, do you feel you need an MRI?. I understand they are expensive, but the upshot is, if there is new activity, maybe a switch in meds is a good call?. But, I totally understand where you are coming from re switching meds. I also wouldn’t want to go on steroids either!. Been there done it, and hated it. Don’t forget, its your MS, your body, and at the end of they day, your decision. Doc’s can advise you. And most of them don’t show too much compassion. I used to take it personally, but guess its their way of not getting too emotionally involved?. I don’t think I have helped much!. I think I’m trying to save you money and worry, but you need to think of what you think is neeced?. If you get signed off work for a while and rest, will it help?. Please keep me posted. X

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      • Oh no you did help. You gave good advice and I appreciate it! I had a terrible relapse in October and was out of work on short term disability for a few weeks, it helped a lot. I think it is possible this leg issue is due to stress, which I am under a lot of. I might give it a little while longer before I resort to going to the doctor with my concerns. I think the reason I had SO much new activity on my last MRI is because I switched meds, but now I am on the one that worked very well for me for 6 years. I am not comfortable switching again, unless it is a cure:)!! I will definitely keep you posted

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  7. And, are you eating your greens, and fruit, and getting enough vitamins?. This is what my nurse tells me when I’m struggling. :).also, don’t forget, you have a lot going on in your family life, so I could be a little bit of stress which has made symptoms last longer. Its hard, I understand, but try and switch off, mentally for a few mins during the day, before you go to sleep, and must breath slowly and relax. X

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    • You are amazing! I will be very honest, I am probably not eating the right foods as I hardly eat! I am taking all the right vitamins though! I have started using this meditation app someone recommended to me, I hate to admit I do not remember who recommended it, but it is great! I know how much stress impacts MS and I am trying to reduce it but failing miserably. Thank you so much for all of your great thoughts and support!

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  8. Our comments are crossing!. Just read your comment re stress. Yep, it always hits us hard. If the med for 6 years has been working for you, then if I was you, stick with it. Plegridy works for me, even though my nurse was trying to get me to switch. X

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      • Afraid so!. mine was due to stress also. Just about to go to sleep, as it’s late here in the UK, but had a thought. Are you able to see a physiotherapist to help stretch your muscles etc?. Or are you able to do gentle leg stretches?. I’m no expert, so would not recommend anything in case I gave you wrong info. I also remembered a documentary I watched a while ago, and there is a cannabis (no thc so you won’t get high), based mouth spray MSers use to help with pain and spasms etc. Not sure if you can get it in the States?.

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      • Oh dear, I do not mean to keep you up! I did not realize how late it was in the UK! I have not seen a physiotherapist, but maybe should look into it. I can do leg stretches and I do try to stretch. I do not really know what leg stretches to do though. What documentary did you watch? I highly doubt I can get anything like that in the state I live in which really sucks!! I hope you sleep well and thank you SO much for all your advice and knowledge, you are fantastic!!

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      • Apologies for the late reply, and no worries re the late night. :). I cant remember the documentary name, and tried to google it, but its not showing. Was a few years ago. But one day I guess they will come to their senses and legalise it!.

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  9. Constant pain can be very frustrating and discouraging. You’re entitled to a bad day with negative thoughts but I know you will turn those thoughts around. You are too determined to let this illness get the best of you. Stay strong and positive!!

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    • I am definitely giving it the best shot! You are right, I am way too determined and stubborn to allow for this illness to win this battle! You remember when I was first diagnosed, I vowed to never surrender to the MS and never let it win!? I stand by those thoughts now, it has just been a little frustrating! Thank you Mom!!

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    • Thank you so much! I can not tell you enough how much I appreciate your comment and support! We are all here to support each other through all the struggles life throws our way and in turn, we will all win!

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  10. Hi Alyssa,
    Scooterjon here. I read your posts and I feel bad that you have put with this MS crap almost as long as I have. I also have alot of spasms in my legs daily! Hopefully, I’m going to have a post about spasticity soon. I don’t know about you but my legs go up and down when they spasm. My legs would go like this all day long if I didn’t move my feet to another position. If I’m on my scooter my foot bangs against the deck of my scooter. Then sometimes I’ll move my feet and my whole leg will stiffen straight out and I can’t move it. It’s like it’s paralyzed in that position.

    Funny story… I was talking on the phone with my mother long distance. At the time she was 86 years old and kind of hard of hearing. My right leg became spastic and my foot was hitting the deck of my scooter pretty hard. All of a sudden my Mom says, “why don’t you answer your door, I hear somebody knocking.” It was just my leg being spastic. I laughed at that one pretty hard! lolol I hope that made sense?

    I feel the same way as you when I’m describing my MS in my blog or on the phone. I hope that people will understand that I’m not feeling sorry for myself cause I’m not. I tell people I was just dealt a bad hand like in poker. Alyssa, I’ve been telling people this for the past month and feel free to use it. When describing myself to someone I always finish with “at least I’m on the north side of dirt!” lol

    Have a great day tomorrow,

    Jonny aka scooterjon

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    • Thank you so much for your comment Jonny! I have done a post or two about the spasms and how frustrating they are. I am really looking forward to reading yours!
      It seems that my spasms just cause a massive amount of pain, which is hard to deal with. I told my husband it is so hard to walk, but I still do even though I should be resting more. I am not one to follow the directions when I am supposed to. I am a bit rebellious, especially if my specialist says it because her and I NEVER agree on anything. I am looking for a new one in the city we are moving to in the new few months.
      It is funny you said that we are just dealt a bad hand. I always say that and add that I will not fold. I love how you describe yourself “at least I’m on the north side of dirt” That is priceless. I really appreciate your comment and I am looking forward to getting to know you more!
      I hope you have a great day tomorrow as well!!

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  11. Oh Alyssa, I don’t think anyone can blame you for not wanting to tell this to a doctor and have a doctor you don’t much care for confirm what you fear is happening. I’m just so sorry things are so tough right now and that the pain and spasms seem to be never-ending. There’s a caveat, I think, to the whole “don’t give up hope” and “stay positive” sayings – sometimes we just need to let that go, feel like crap, appreciate that we’re disappointed/frustrated/in pain/utterly fed up, and take however long it takes to just accept that. You do incredibly well at fighting the good fight, but eventually you need a break, too. I don’t have MS so I won’t even pretend like I can offer any kind of advice there, but I will say that you’re an amazing woman, that you can and will survive this, and that you deserve brighter days ahead. Hang in there. I’m sorry I can’t offer anything helpful whatsoever but please know I, and all your lovely readers on here, are all rooting for you.
    Sending hugs and love your way  ♥

    Caz xx

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    • Oh no worries Caz, just your encouraging words are priceless and I SO appreciate you! I do know these issues will end in time, it just takes a while. Stress is not helping the issues at hand, but not stressing about life is SO hard!! Thank you so much for understanding that I do not want to share this information with my doctor. I know it is important to have trust in the doctors, but she is not the welcoming type of person!
      Again, thank you so much for your kind and supportive comment. The friendships I have been able to build are beyond wonderful and so helpful! I hope you have an amazing day! Sending hugs and love your way as well!

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