She has a lot going on in her life at the moment, things that would break most people and yet she is always there to listen to me. I will never be able to put into words what she means to me or how much I love her. She is such a special gift in my life, she is my biggest supporter and is always on my side. Poor thing probably regretted asking that dreaded question "How are you feeling today?"
I was having one of those days where I was feeling extremely sorry for myself. I was working on only a couple of hours of sleep and I felt dizzy, exhausted, tingly and numb. I was back on the emotional roller-coaster that is MS.
Since doing my research into my symptoms (both pre and post diagnosis) I have joined many MS groups looking for information about the disease, as well as possible treatment options. I have been very lucky and have met lots of new friends and they too have been a great source of support and advice as I struggle to come to terms and adjust to my feelings, both physical and emotional.
Some MSers that I have become friends with are further along the path of being diagnosed and have learned how to manage their day-to-day "stuff". Others are more like me, still riding the ride of emotions from day-to-day and fumbling around trying to adjust. One of these lovely ladies was offering me support yesterday and I told her that my blog was going to be so depressing at this rate and that I might not bother, I don't want to bring people down. She replied "but it's just the truth of MS. People with the illness will be able to relate".
I got through my day and decided to "snap out" of the funk I was in. I prepared a meal made from a new recipe and pushed all the negative thoughts to the back of my mind so that I could enjoy the evening with Phil and my girls.
However, the only way I can describe my evening as I sat watching TV is psychological torture. It was like there was an electrical storm inside my body. Tingling in my legs, electric type zaps in my fingers and toes, a numb face (complete with tingling lips and tongue) and the return of the ice-cube in my brain. I so badly wanted to neck a couple of glasses of Pinot Grigio to dull these senses but I was determined not to. I don't think the cure to MS is at the bottom of a bottle!
Sometimes this feels like a nightmare that I can't wake up from. I want to wake up! I want to make plans and look forward to them without the immediate thought entering my mind of "but what if I don't feel good on that day". Phil and I were watching a TV show and someone was talking about his trip to Vegas. Phil and I have both been to Vegas but never together, he looked at me and said "we should go to Vegas, we would have a wild time". We WOULD have a wild time because we both like to party but then the little voice in my head said "but what if you couldn't handle it, what if you didn't feel good and ruined the whole trip?" SOD OFF voice in my head, always bringing me down lately.
Last night I couldn't fall asleep so I took a sleeping tablet. I lay in bed willing my body to "switch off" so that I could sleep. Finally the tablet did work its magic and I drifted off, sleeping right the way through until 7am.
This morning I have a sleeping pill "hangover" and my body is zippy-zappy as always. I won't let it drag me down today however because it is "Date Night" with my man and I have a lovely Indian meal to look forward to. I might even have ONE glass of wine.
So enough about me, how are YOU?
well done karen yet another great blog brought tears to my eyes xx
ReplyDeleteThank you my friend. Big ((hugs)) to you. xxx
DeleteHi Karen, life after diagnosis is an opportunity to understand how Your Body works & Responds to different things.
ReplyDeleteGood times & Partying may look different now how we know that we have to prepare our body for wild times so in your mind, You or Hubby don't feel disappointed.
There are plenty of Good Times to Be Had as {M}any {S}ymptoms is Manageable.
Hoping You Enjoy Date Night & try to do low impact ativities that help you build stamina & release endorphins, you will find it changes mood, increases energy, & releases happy endorphins.
Best Wishes.... Enjoy every Learning Moment of MS..
Thank you :)
DeleteI dont think I am at the enjoying stage of learning, I think I am still at the "you gotta be kidding me" stage lol
I am sure I will learn with time how to manage this crazy thing.
Thank you for your message and your support. Very appreciated. xx
i was told by my ms nurse the other day there that because i am thinking that i cant go out shopping etc because it tires me out, i am setting myself up for failure next time i go. so she said to be positive. haha easy for someone who doesnt actually suffer the illness to say.i do hear from people who have had ms longer that you do learn to deal with everyday things , but as you karen we are still learning. please take care xxx
ReplyDeleteShirley,
DeleteI do think trying to have a positive mental attitude is important. It is easy if we find something (like shopping) hard to tell ourselves it will always be hard but in fact, it wont be.
Sometimes we can get stuck in a rut (I find myself doing the same). We can support each other as we go through this ok? You are right, an MS nurse can only advise from her point of view with training and experience with other MSers but NOBODY knows how this crappy thing feels unless they are dealing with it themselves.
Take care my friend, lots of love to you.
xx
i love you mum :) xxxx
ReplyDeleteI love you more than chips from the chip shop, on fresh white bread with lots of butterand smothered in salt, vinegar and ketchup. You KNOW how much I love my chip butties so now you know how much I love YOU baby girl. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
DeleteNever worry about sounding too depressed on this blog. This is your safe place where you can vent about how you really feel about your situation. If you do it here, it helps you not tire your family and close friends out about your situation. Thankfully, you do have a sister and family that have been supportive and will likely continue to be so. But from my personal experience of many years with this disease, I know that it is also important to recognize that they may also need a break from what is happening. Because it is happening to them too. As for getting it right, it will be a moment by moment thing for you. Especially since this is new for you, you will be going through the stages of grieving. And you will feel anger, despair, denial, etc. And you will go back and forth. And that will take as long as it takes. Eventually, you may find a way to reclaim a new you. How you do that, when you do that, is something that only you can determine. There is no right way to do this. I have had this illness for almost forty years and, while I have created a meaningful life for myself, I still have to renegotiate the MS path daily. My heart goes out to you as you tread on this new path.
ReplyDeleteJudy
Thank you so much Judy,
DeleteI am very conscious of not wanting to be a burden to my family and friends. Who wants to hang around the moaning chick?
Your comment makes so much sense to me and because I am such a control freak I am feeling frustrated that I cant control not only the disease but also how I FEEL about it!
I am so grateful to precious people such as yourself who have taken the time to not only read but to offer words of support.
From the bottom of my heart, thank you.
xxx
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ReplyDeleteI feel for you, it took me 6 years to come to terms with my diagnoses, and I'm still active - eventually I went for hypnotherapy and she helped me realise that I had never been given the chance to grieve for the life I thought I would lead and my health. Once I dealt with the grief I felt much better - still feel sad, frustrated, etc, etc but I now don't wake in the night feeling overwelmed with guilt or panic. Keep talking about how you feel I bottled it all up as I didn't want to burden my family. Good luck Karen
ReplyDeleteThank you :)
DeleteI think it is really important to "ride the ride" and allow yourself your feelings, whatever they may be (and they do change every day I find). I am really trying to stay positive but some days it does get overwhelming. Writing this blog has helped. Comments and support from lovely people such as yourself has also helped a lot.
Best wishes,
Karen
Yes MS is like a roller coaster in many ways...Finding friends with MS helps a great deal
ReplyDeleteIt certainly does. I have been very lucky to have met some really nice people.
Deletexx