I think y’all already know that I have had Multiple Sclerosis for over 20 years and for the most part I am still going strong. Honestly, some days are worse than others and most issues are triggered by either the weather or stress. I do not like having a pity party but wanted to quickly explain what I think are some of the most challenging aspects that come with this illness. Thankfully, over the years I have been able to get a much clearer understanding of what MS is and what it can do to a person. Crazy as this might sound, this has been good because when I was diagnosed, I was very ignorant to this illness and had an immature mind, but I was young and that is my excuse for my childlike thought process.
Of course, I do know it could always be worse and I am thankful it is not any worse than it is, but that does not mean it is not challenging and frustrating. The issues I am going to explain are not in order because I cannot say one is more challenging than the other, as they can all be grueling. No matter how challenging and or frustrating these issues are, most can be managed or at least I try to ignore them.
Multiple Sclerosis can be incredibly unpredictable, which can be burdensome. Never knowing what to expect or when it is going to strike is unnerving. It is embedded in my mind to have things planned but living with the unpredictability of MS can force plans to be altered or cancelled. Of course, with COVID there have not been many outings planned and I work from home, so life just keep moving along.
This illness is not something new and even though there have been vast amounts of research done, a cure has not been discovered. I dream that a day will come when I wake from the nightmare of Multiple Sclerosis and I will not have anymore pain, weakness, numbness in my legs and feet, dizzy spells, or any of the other awful symptoms caused by MS.
Another issue that can be exhausting is the constant pain I feel in my legs and mid to lower back. This has been something the MS caused since I was diagnosed, so I try to not allow it to impact my daily life too much, but it does still cause difficulties. I would say the leg pain is a lot harder to deal with than the back pain because leg pain makes moving around extremely laborious. The back pain is awful, but most of the time a heating pad helps relax the muscles.
I also experience neuropathy in my legs and feet, which causes an annoying tingling sensation. This issue is not easy to ignore because it is constant. It does not bother me as bad during the day but gets increasingly worse at night. The tingling feels like spiders crawling around my legs and feet and not too much decreases this issue. The neuropathy issue makes falling asleep and staying asleep very challenging.
Another issue I battle with is fatigue. It does not matter how much sleep I get, which is never as much as it should be, I am always tired. I have noticed this gets worse towards the afternoon and I start losing my focus because I am exhausted. I arrange my work tasks, so the most in-depth things are handled in the morning when I am the most alert.
The hug I never want is called the MS hug. Thankfully, this is not something I deal with daily, but when I do it is miserable. It kind of feels like there is a snake wrapped around my abdomen and continues to squeeze. It is uncomfortable and painful. For the past few days, I have been battling with this and ignoring it is not making it stop. However, I do think my specialist is on a need to know and I do not think she needs to know about this because I do not want her trying to force steroids on me as that alone makes me feel terrible.
Although I have lived with this disease for over 20 years, some of the fears I had in the beginning do still haunt me. I wonder will there ever be a cure, how much longer will I be able to walk for until I am in a wheelchair, is this disease going to end my life someday, and many more questions run through my mind. Even with all the unanswered questions, I am still never going to give up and allow the MS to win the war we have been fighting.
Thank you for visiting my site today. I hope you have enjoyed your weekend and you were able to do what brings you the most joy. I hope what I have shared with you today will be give you some comfort and help you with something you are dealing with. I do not normally share posts that might come across as complaining, but I do want everyone reading to know that no matter what you might be struggling with, there is someone that understand. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!