Someone wrote in our FB page, “I try to be the new me, but I miss the old me”.
I feel just like that, trying to make the best of it all but grieving sometimes. What is the one thing you miss the most?
I know what I miss most of all and that is looking forward to going to bed instead of dreading it. I would so love to snuggle down under warm covers.
Lack of fatigue and cognition.
Waking up in the morning and being able to just dose rather than setting on fire and twitching, plus I would half the energy I used to have and I would be happy
My daughter running and playing in the ocean somtimes we would lose track of time and spend the whole day there exploring. She can’t take the sun and myositis it’s hard for her to walk in the sand/surf we live 1 mile from the shore. It’s our paradise now off limits.
Dearest Joy,
I cried and then prayed for you and your daughter… We all have lost so much of who we used to be and do. Now we all are trying to find new ways of living and enjoying life and I am thankful that we can find new things. There is hope that a cure will be found, but for now we have found new friends that understand. I feel at home and kindness with this new family that understands.
Thank you Ben’s Friends.
Strength and peace to all.
Me too that sounds wonderful instead of having my ceiling fan going and waking up a lot in the night in pain then barely being able to walk in a morning.
I don't know that I could pick just one. The things that I miss, that I grieve for, reach from the little everyday things that others take for granted, like wearing socks and looking forward to having cozy warm feet, to the big things, like looking forward to taking a trip (I am of retirement age, and I thought we'd be able to travel, but it's really not possible when I feel like this. It would be better for my husband to go alone, but he is kind enough to not want to.) Enjoying the summer would be nice, instead of dreading it. Spending a day at the beach. Going to fairs and festivals. Having said that, I AM grateful for the things I can still do, and for the support of my friends and loved ones. I am grateful for this group. But I do grieve the things that have been taken away, things that "normal" people do without a thought. Love to all. XXXX
I dearly miss sleeping. I can’t sleep thirty minutes at a time before 5 AM . Then I sleep until noon. I have to adjust blankets and air conditioning all night long. I only dream of vacations. Thank God I am retired and live with my children in an apartment made just for me and they don’t care how long I sleep.
I miss my two boys seeing a real smiling face, having a young energetic mam who was up for anything. I had strength to fight for anything in life for them. I have now stole there freedom of no worry. I can’t even fasten they school buttons on polo shirts. As my fingers are to red swollen and impossible to grip. I fake my smile as best as I can I had a massive great circle of friends. We loved to get together and be free spirits, letting my life roll on its own. Now i few close true friends who care andunderstand that i CANT do what I used too. Miss having my independence. (Hate having to ask for help) most of all I miss not knowing what pain was. I don’t know how I dreamed of saying ouch or let a cry or sigh out, the describing words for Pain in EM is not even in dictionary.
You guys understand this better than anyone! I miss being able to take a hike or a walk for that matter. I miss going to sleep and not dealing with burning all night. Taking a shower with moderately warm water too. Take care all.
HI Nel,
I miss walking for more than 5 minutes,,driving my car..not being able to do hardly anything for myself, my career, basically everything.
My husband and I have been legally separated for 12 years, but he has been living here with me for over a year now, doing everything to help me. My son and daughter live in the house also(he is their stepdad) but they are not much help. One is 29, one is 31..My husband really wants to leave and get back to his life. He doesn't even live in this state. I do not blame him at all-he has been wonderful.
But I am really getting so scared to think of him leaving.
This is such an insidious and cruel illness. Some people tell me well, it's not terminal at least. Yes, it is, I am alive but I don't have a life anymore.
I miss everything- I miss being able to go to a grocery store, dancing, hiking, walking, driving too, I miss the freedom to be able to go somewhere. I miss being able to earn a living. I miss being able to dream about things I would do in my future. I miss cooking for family and friends. I miss camping, and going to concerts. I miss seeing my feet as a normal color, with a normal size, I miss shoes and boots. I miss going swimming, going to just pay a bill, to a nice breakfast or dinner. I miss not being able to do anything without a fan. I miss me- and after 7 years of this- I still miss me. This is a cruel illness as "twinkle toes" mentioned, Because no one can comprehend how much pain one can endure and be conscious, unaltered, and still remain alive. It is truly amazing. To the point of wanting and needing to blackout, but the body doesn't.
Hi Twinkle Toes
You hit the nail on the head when you said that people tell you that at least it's not terminal with your response of the fact that you are alive but don't have a life anymore, that is a perfect way to describe what we all must feel like! I must admit that when my husband passed away last year I was envious as he was out of his suffering, but I was still here on my own though with no quality of life. However, I know it's hard, but we must all keep going and try and find things to do that we can do, as one day the more that doctors are aware of this illness they may well find something that helps us. Being a member here and posting things on forums we can tell our doctors and those people that don't understand what we are going through to just look at this website and the forums and then maybe they might just take note of what a horrible illness it is. My GP had never heard of it and so I did just that I showed him this website and since then he is being brilliant with me as he now knows just how bad I am. He allows me to email him if I have a question etc. and yesterday he came to see me along with a district nurse who was doing my dressings and I mentioned that it was wonderful being able to email him and he said that I was his only patient that he allows to do that.
Everyone here has covered all the life altering realities of having EM. The words do not do the situations justice. There is little I look forward to now and that apathy is the part of me that makes me the saddest. I just had my first grandchild after having resigned myself to never being able to have one. My son and his wife had a little girl but staying with them in a very hot place, trying to make meals and help care for the baby was torture. The very thing I had dreamed of my entire life became miserable and all I could think of was going home. I stood over my grand daughter crying but no one knew because sweat poured off me like my body was a fountain. Traveling to see them in August already makes me start flashing and feeling stressed. I miss being happy.
I suppose that for me, the disease has not yet progressed to where many of you are. I have only had this for 7 months. I do everything I can to avoid the pain. I sleep with the AC on in my bedroom, take the gabapentin 2 hrs before I go to bed so it wards off the pain of being under the covers, avoid hot baths like the plague, only wear sandals, walk from patch of shade to patch of shade, use an umbrella in the sun…
I miss hot baths before bed. Being able to wear socks and shoes. I still “forget” that I have EM sometimes. I signed my boys up to play soccer, then realized there was no way I’d be able to be in the sun and heat for an hour. I bought a firepit grill to bbq dinners and make s’mores, but 15 min in direct sunlight made my feet burn so badly I now dread going out to grill anything because of the pain I will be in for hours after.