Apologies for not having written a blog recently, or regularly recently. Although I do try to keep things real, sometimes you just do not want to talk about, or write about the dark times. Everyone has them. The problem with social media is that we see the false positives everyone chooses to pump out. We then run the risk of assuming everyone else’s life is better than our own. trust me, it probably isn’t.
The past couple of months have been pretty stressful. Coupled with some negative experiences in places that are usually positive experiences means that some people will have seen a lot less of me recently than normal. The reason I have done this is because I do NOT need extra stuff to deal with, so if a regular positive has become a negative, why would I continue with that?
In addition to this, I have been trying to use my arms and legs more, and my car less, in order to try and save some $. This has meant I have run into a brand new issue that has not troubled me before. the Lymphedema leg.
Lymphedema limitations
What has started to happen on the right hand side now is, if I do too much in the way of leg based stuff, my lymphedema actually gets so congested that it starts to impeded venous return. What does that mean? It means that the lymphedema swelling in my leg starts to affect my veins which means the blood struggles to get back up to my heart. (remember, I have one less vein in that leg as it is, the great saphenous vein – then largest – was removed and grafted into my left leg in a failed attempt to save it.) The physical symptom of this? a red very cold foot on top of the already elevated lymphedema pain. It took us 2-3 weeks of MLD treatments to get the leg back to normal after this happened recently.
So, now I have to be mindful of walking, not because of the distance, but because it causes me lymphedema pain if I do too much, and now an extra level of symptoms that takes a few weeks to put right.. Biking also causes me lymphedema pain, and that seems to be a lot more erratic and out of my control.
What annoys me most…
Now, do you know what annoys me most about all of this? ACC don’t give a rats ass about my pain and refuse to fund anything that will alleviate it. And, on top of that, The people who do the para classification for the ever elusive multi-sport race that I am really trying hard to get back to, also don’t give a rats ass about my pain and still expect me to be able to bike and run like any other normal person. They will not even account for any of the medical reasons why that would be impossible for me.
Swimming
This has kind of gone by the wayside recently due to financial constraints, in favour of things that I can step out of the door and do without any charges. Everyone is feeling the financial pinch these days, so I am not going to spend too much time getting hung up about this. For a similar reason, I also had to pull out of a swim event I was due to compete in, in January this year. With that and all the other personal and family stresses I have had, in effect that means no events for me till at least next summer, unfortunately.
Accessing my local town
I remember an ex colleague telling me this would be horrible right at the start of my disabled journey, and she was not wrong. I am using my wheelchair and hand bike more, recently. This means that there are a world of accessibility issues you probably have not considered if you have still got two feet:
- The varying camber on pavements and roads makes some crossings a nightmare for a wheelchair user, not to mention dangerous
- Road works, closed pavements, and the fact that they did not consider a wheelchair user might need a dropped curb, which they now can’t use because it has been blocked.
- Shop access… steps (are a big fat nope), access ramps that are too steep, manual doors that are too narrow (and the door on the other side is locked shut)
- Shops that pack too much crap in and block all the access isles. This happened in both Farmers and Spotlight today. It meant in the end I gave up and left because there were parts of the shops that I just could not get to because some wise guy had filled all the main thoroughfares with crap that was on sale or something, meaning I could not even fit down the isles. That is a fire hazard to begin with.
And many more, but these are my top 3 in the list of inconveniences that is accessing the centre of town!
Another hearing
Yep. Mel V ACC number 9. Yes NINE. I do not like doing this, in fact it causes me significant stress and fires off my PTSD like crazy. But, I will not be walked over or taken advantage of, or have things taken off me that are rightly mine. So, watch this space. I have won 7 of the 8 we have been through so far. This alone is enough to send me into a spiral melt down. D day for this is in a couple of weeks.
Self care
This is what I have been burying myself into. With varying degrees of success to be honest, but I am still working on it, top of my list every day. For me, this means journaling, cycling, walking (although that is a double edged sword because they also cause me pain), reading, writing, and crafting. I am enjoying miniature model making, and am back at that again after a bit of a hiatus. I have a number of different craft type pass times, so whichever one is working for me right now is ever changing.
SO, whatever stresses might be happening in your life right now, make sure you always put self care somewhere on your list for daily things that NEED to be done.
