For the last couple of weeks I have been participating in a global scrapbooking experience called Week In The Life that was created by Ali Edwards http://aliedwards.com/projects/week-in-the-life. I have really enjoyed being part of something again. Living with my disability has made it difficult to be as social as I used to be. I miss having friends to hang out with, to have coffee with, the ability to go to church, the movies, fellowship groups, book clubs, etc. Doing Week in the Life has given me back the feeling of being part of something. And not just anything, but MY thing! I like to do a lot of crafts but scrapbooking is my passion.
I wholeheartedly dived in to the project. I got so excited about it that I documented the week before the "official" week started. I even worked on starting my album and created my title page. This was BIG for me, since I have not completed a single scrapbook page for 2 1/2 years. I felt empowered, and excited and elated that I was finally doing what I love AND getting to do it with the support and inspiration of Ali Edwards: http://aliedwards.com/blog and the communities she created on Facebook: https://www.facebook.com/groups/aeweekinthelife/ and on her blog. It has been so much fun and has really fed my creative side. I even participated in spite of having several migraines during the two weeks (my week and the official week). That meant that some days I did nothing more than read and respond to other people's posts, but I was still part of it.
This week I had planned to print out my pictures, read through my daily notes, find sketches that would accommodate the number of pictures of each day along with other bits and pieces such as a business card, a Facebook meme that was particularly appropriate for the day and even a lovely card I was given on one of my days. Sadly, I have been feeling really ill this week. Not just migraines - the extreme pain and inability to think or speak clearly, but also other side effects such as nausea, achy muscles and being super sensitive to light, sound and temperature. Add to that that when I have tried to work on the project, I've discovered that my printer is not only out of colored ink (this is how I usually print my pictures), but isn't working properly. In addition, my computer operating system is too old to accommodate any new programs (several plug ins like Flashplayer and Java will not update) and my version of Photo Shop Elements is terribly outdated. The frustration I am feeling is overwhelming.
This is what it is like to live with an "invisible" disability. You get so you try to work around, over, through, or in spite of the disability. But because this disability has prevented me from working outside the home for the last 8 years, I don't have the income to upgrade my technology when it needs it. I was finally approved for disability (after a five year fight) in June, but as of today, August 27, 2015, I still have not seen any money. Not the monthly stipend, or the retro active amount or even my lawyer's fees. That means that I am still struggling financially, and this too, adds to my frustration. So, the frustration, feeling physically unwell, and being angry and depressed at the bureaucratic mess that is the process for Social Security Disabilty creates bigger, and more severe migraines.
At this point, I feel like curling up in a ball and crying. However, that not only solves nothing, it makes the headaches worse. I have been working hard in the last couple of years to accept the limitations of this disability and come to terms with the fact that I can no longer do the things I used to do - or at least in the same way. It takes me much longer to get anything done, even day to day activities like washing dishes, picking up a room or even taking a shower. Sometimes I cannot even do them. I have learned to laugh at myself when I forget something or have to ask someone to repeat something, I have learned that I am still a valuable person even when I cannot do things they way I used to. I'm working towards accepting my limitations, but I have to tell you this is not an easy journey. I know that we all have limitations - even those without disabilities have limitations of one kind or another. But I feel like someone has stolen my life from me and replaced it with a very pale imitation. I HATE not being able to do things the way I used to. I HATE having to write things down just so I remember something small. I HATE being limited to the amount of physical activity that I can do. I HATE not being able to go and do what I want to do when I want to do it. So, I guess I'm not doing well with accepting limitations.
Of course, there are bad days (like today) and there are good days. On my good days, I can laugh and I can enjoy the silly chatter of my six year old grandson, and I can get around fairly easily, and I can do things without too much difficulty. Unfortunately my bad days far outnumber my good days. So, I'm working on acceptance. I've always been harder on myself than on anyone else, and that's a hard habit to break. I am, however, learning to allow myself the grace to be, to feel, to experience the difficult parts of my life. The harder I fight, the worse I feel.
So, on this day, I am going to be grateful for the fact that I have actually put together a scrapbook page for the first time in 2 1/2 years, I am grateful for being involved in such an amazing project and group of people from all over the globe. I am grateful to live with my daughter and grandson who love me and value me. I am grateful for friends (even though they live far away) and Facebook friends that help me feel connected. And tomorrow, I'm sure, will be a better day, and I'll manage to get my album done even if it takes me a year of tomorrows.
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