One of the hard things about any illness is accepting, or even worse, ASKING for help. Well for me anyway. But I am working my way through it and slowly making progress.
One of the big lessons that I am working through is learning to work out what my needs are in the first place, and what others can even do for me that I either can’t or shouldn’t do myself. It is really easy to say that not being able to ask for help is a pride thing, but I am learning that it is way more complicated than that! We spend our whole lives learning that we need to help others and that we should not be an unfair burden on others, and but we also learn (rightly I think) that it is as good for our soul as anything, to be ABLE to do things for ourselves.
When our bodies let us down, being able to do something for ourselves does soooo much!:
- It gives us a sense of HOPE (“if I can manage this then maybe next time I can manage something a little bit more“), and hope in turn gives us a sense of perhaps, just maybe, there is a chance at a better future. Something to work towards, something to look forward to. On the flip side, without hope, there is almost no option other than to give up. It is soul destroying to feel that this is it, nothing can ever be better than the pit that I am currently in. So hope isn’t just a pretty uplifting word, it can be EVERYTHING and often times it is “all” that stands between success and failure, and even life or death …
- Being able to do something for ourselves also gives us a sense of independence and worthiness if we can carry our weight. Being dependent on others can be tough, because each of us has our own cross to bear, and we know that none of us wants to carry two or three or four crosses at the same time. As humans we care about each other and no one wants to hand their cross to someone else and then sit back and watch them struggling with both! Asking someone to help us with our cross for a minute and lend us a hand as we both put our backs into it as a team and carry it over a hump is one thing, and in fact the experience can be hugely impactful and enriching for both. But to sit on the ground and ask someone to carry both their cross and ours, and then to sit back and watch them do it, especially long term is HARD!! It can feel soul destroying from this end! The guilt can be crushing as we watch loved ones in pain.
- In some cases it CAN be good for us physically. I walk a VERY fine line between not doing enough and doing too much. Last year I spent most of it on “rest” and it weakened my muscles to the point that I have had way more injuries since, those injuries are worse than they could have been, and I am recovering even more slowly than I used to. I NEED to be able to walk a short distance, or reach out to get something, I need to USE my body to keep it well. I don’t want to just sit and have others do everything for me because it will hasten my decline ever further. I don’t expect anyone to know that balance when I myself am only just learning it and will probably never get it totally right, but when I am able, to do things myself is physically very important for me.
We have all been in that situation where you are carrying a huge handful of stuff, probably more than is safe or helpful, but we thought we could do it in one trip instead of two, and then sure enough, that little thing at the bottom, that pen, or keys or whatever, jumped out of the pile as if to annoy us on purpose, and we are completely stuck. If we bend down to pick it up we will likely lose the entire load, but if we can’t pick it up now, then how will we open the door without the key, or someone might pick up our pen and keep it, or whatever. It is VERY easy to ask for help. All the right ingredients are there: We simply cannot do it ourselves, it is easy for the next person who walks by to simply pick it up for us, and it is asking for something very small and simple.
Many of us have also been in the situation where one of our hands is out of action due to a break or a sprain or whatever and it is bandaged up. You go to sit down for a meal and it is bacon and eggs… but you only have one hand with which to hold AND cut your bacon! It’s nothing for your friend or partner to reach over and cut it into bits for you so that you can eat it with one fork.
One off asking for help is easy. We are nothing but thankful to someone who picks up the keys or cuts up our bacon. But yesterday we had lunch on the run and the couple that sat down at the table next to us looked “average” enough, until the guy rested his right arm on the table and I noticed that his whole hand was missed. I know several people who were born with missing hands or fingers, and they look quite different to this. This guy clearly was used to having a hand there, and his bones and muscle were that of a fully functioning arm all the way to where the hand had clearly been completely severed with a neat scar. His bacon and eggs arrived, and he neither asked nor expected his wife to help, and neither did she offer. He clearly struggled a little using his left hand, and it didn’t look as though he was naturally left handed, but he managed really well to cut up his bacon with one hand using his fork, and it took him a while but he got there. He clearly wasn’t brand new at this.
Cutting up his own food was training his left hand and all the muscles, nerves and processing going on between his hand and his brain as well as everything in between was getting a real work out. But if his wife had cut up his food then he would have no hope of any other way of eating meat than of having someone cut it up for him, he was carrying his own cross brilliantly I thought, and he was strengthening his body and his skills in the process.
There are many other ways that doing things for ourselves is vitally important, and none of them have anything to do with pride, stubbornness, or vanity! I am not saying that these things don’t ever come into play, but they are not all that is at play, and in fact they are only the ugly cousins of the more important reasons why it can be very hard to ask for help.
So doing things for ourselves is vital. But there are also things along this man’s journey that he simply would not be able to do YET, others that he will never be able to do the same way or as quickly, and so there are times in his life I am very sure, where he will need to suck it up and ask.
Yesterday I tripped over some fresh air and sprained my right ankle. I hobbled to the couch and sat with my feet up and rested for a bit. Then I realised that I needed something to do for the rest of the afternoon while I put my foot up, and so I got up again to fetch my phone, my laptop and a drink. ….Only to realise that I couldn’t get far because of course my left foot can’t take more than minimal weight bearing and I now needed to place NO weight on my right foot at all.
I have sprained my ankles hundreds and hundreds of times in my life. I can strap them myself, I know how to rest them, and I rarely if ever say anything to anyone because I am so used to it, I hate it and it is frustrating and upsetting and it hurts, but it is simply an every day part of my life. But now that I am aware of the damage that I am doing by NOT saying anything, on walking on it when I shouldn’t, and how permanently incapacitated it could render me if I am not careful, I had to stop and take stock and work out what I needed. My husband had just collapsed onto the other couch after a hectic weekend and way too much exercise for his own good, and the last thing that I wanted to do was to wake him and ask him to fetch a few simple things that weren’t that far away. And yet my alternatives were to fetch them myself, or to sit and watch him sleep for a few hours and do nothing!
I don’t have a missing hand, or a left one that needs to learn to compensate, nor do I have an armful of objects because I am silly enough to try and do too much. This isn’t a one off injury and this is going to be par for the course for my forever. But if I ask him to do every little thing for me, then he is going to be sick and tired of hearing about EDS vey soon, and I am not going to be as independent as I can be!
So the first thing I needed to work out was what I needed. Can I really go nowhere or can I see a few things within reach or crawl that I can busy myself with and then get the other things later? Is my crutch relatively near by that I can crawl to and then use that to get the other things? Could I nap too for now? Or do I need to wake him and what are all the things that I could possible need for the next two hours so that I am set for the duration of his nap. He had only just laid down, so if I ask him now he can still have a nice long interrupted nap once he settles down again…
And so I decided to bite the bullet and ask. I needed help and I had no alternative. The crutch was nowhere in sight, Frank couldn’t take the weight from the newly sprained ankle, there was nothing within short crawling distance for me to fetch to do, and crawling anything further than that would be soooo bad for Mah Eeeeds Knees, and out of the question, and I was happy to have just a drink my phone and my laptop to get me through a few hours. So I simply woke him, said I was stuck between my sprain, Frank and Mah Eeeds Knees and if he could please set me up with these three things then that would be fabulous, not to mention being soooo sorry for waking him… He got it in one, was happy to do it, and was back asleep within the minute.
I am learning to know my limits, to ask for help when I need it, to not compromise my health by being stubborn, but also to deliver my asking well; …to work out what I want and keep those needs simple and easy and precise with language that is helpful and playful yet accurate.