Living with a disabilty, whats it like doing daily tasks

@Andy201

I'm so sorry to hear about this, Andy! It sure does sound hard and indeed, it must be difficult to carry out regular day tasks. But I also want you to know that I'm very proud of you for trying to do things around even though it's hard. It does say a few things about your will to never give up. I know you're sad that it won't be like it was before but I look over the positive side that I'm glad you're not hurt anywhere else! In no way I'm invalidating you but it's good to hear that you're well other than your injury. I hope life gets easier for you and things get simpler. Do take care of yourself, you do matter and you're indeed very important! You sound so sweet!

For me, it really depends on the day. Some days I can manage a fair bit, I just need to keep in mind to check in with myself and ensure I'm not doing too much and be aware of triggers that I can control, such as moving away from people who are smoking, or in a mall move to the opposite side of a store that sells lots of scented products. I take emergency meds with me everywhere which can be a bit of a hassle, for example when door knocking for neighbourhood safety it meant wearing a backpack (these are not things that can just go in a pocket, as the med container itself is fairly large as the needle is separate from the loaded syringe and I have to bring extra supplies too plus I need an icepack for summer days).

Other days simply going downstairs can be a trigger and I mostly spend all day in bed, if my husband is around he'll bring me food and drinks upstairs and besides using the en suite bathroom I'll be in bed.

I have lots of days that fall in between these two. Lately I'm mostly sticking at home, getting a few things done but I spend a fair bit of time sitting and I need naps. I might ask my husband to move laundry up/down the stairs for me. Getting out to do an errand is rough and will make me feel ill but if necessary I can manage to do it.

Hi Andy,

I'm really sorry you are going through this. I don't know what happened to your foot but just the mention of bolts sounds very painful. In my experience with my disabilities pain and sadness are synonomous. When the waves of pain hit me so hard I can't hardly get out of bed I find myself getting depressed and isolating myself, which is a big no-no. I was always a very active, social person and to go down hill so fast has really knocked the sail right out of me.

I have to force myself at times to just open my apartment door and let in some fresh air so I know how the disability can make you feel all the negative emotions. As long as you are moving forward and taking steps to fix the problems then you're making progress. I have to tell myself multiple times a day that while I'm not as healthy as I used to be I know this situation will not last forever. There are many wonderful, caring doctors out there that have made it their lifes mission to make people like us better.

I battle the depression and anxiety daily and am constantly trying to find new ways to cope. Some days I give in and stay in bed but for the most part I'm to stubborn to let it keep me down for long.

I don't know if any of this has helped but please feel free to reach out if you would like to talk more.

Please hang in there. Things will get better

@Andy201

I think many of us struggle with blame and guilt and other negative emotions. It is what it is. 20% of the population will have a disability at some point in their life. I find my self in that 20%.

My issues are neurological, so sometimes it is fatigue, sometimes brain fog, sometimes balance and coordination, sometimes weakness. I have good days and bad days. So planning is difficult. If I have to go out and do something and it is not optional, I plan a rest day before and after to help make sure I am up to doing the task. For my days at home, I have optional "To Do" lists, things I will do if I have a good day, and I also make a point to have things on the list for my days when I rest. I have "listen to relaxing music for 15 minutes" right next to "do dishes" on my list. I have activities like listening to motivational recordings or mindfulness exercises on my list too. If I am having a day when I cannot get up most of the day, it feels good to have a sense of accomplishment and do things that are beneficial to me while I rest. Some days cooking is a challenge. I have foods that take little to no preparation and I try to keep a generous supply of these foods on hand. On a good day, I can use my hands and chop foods easily and I can make dishes and freeze them for the days that I am not able. Some tasks that take strength I try to leave for the days when I have it, it changes every day. So, the lawn gets mowed when it gets mowed. I will get it done eventually.

I think the most important thing is that I have goals, and I work towards them every day. I am studying statistics online in a self-paced format and when I am ready I hope to return to school to finish my Bachelor's degree. I only need three more classes to graduate. I had to leave because of my health. I work from home in a job that is part-time and I have the ability to change my schedule and the number of hours I work as long as I plan a week ahead of time. I will be able to use my degree and find better jobs and still work with my limitations. I think the key is to be very clear what your limitations/needs are, and also to be very clear about what your goals are.

This article talks about drawing a Venn diagram where you look are your needs, your goals and what you enjoy, and you find the sweet spot which is those things that are all three. In the article it says "emotional needs" but I just replace that with "needs". I think this is the key. You have limitations, but you still have goals. You still have things that give you enjoyment. https://fityourself.club/life-is-a-venn-diagram-41092cea78e7

@Andy201 tiring,slow,painfull.

Every night before bed, I have to do compression wraps on my right leg, foot to groin, which swells due to lymphedema (from cancer treatment 9 years ago). It takes about 7 or 8 minutes, and I'm usually perspiring by the time I'm through. When I wake up in the morning, I unwrap it, which doesn't take quite as long, because I roll the bandages back up while watching TV later. Whenever I go out with the wraps on to walk my dog at night (my leg looks like the Michelin Man) people ask "What did you do to your leg?" And I try to do a brief explanation. When I take off the wraps, I put on a thigh-high compression stocking to wear all day. I am a supporter of the Lymphedema Treatment Act, which is trying to get insurance to cover the cost of compression bandagages, foam, and garments. They are quite expensive, and people have to pay out-of-pocket. The short-stretch bandages were 100$, the foam was 300$, and any support stocking I wear are around $100 per pair. A pair will last 6 months to a year, although I'm very miserly and try to make them last longer than that. Lymphedema is a nasty bitch.