I wish I was stronger ...

If you have a chronic pain disability like me, you may find yourself in your head more often, especially when you are trying to handle your pain in public, like college, transportation, buses, and outdoors.

You are more aware of others around you because you're self-conscious of your pain, when in actuality most of the time others won't have even noticed.

I mask well most of the time but get wriggly and need to stretch and massage legs and things when I'm worse.

I sit there and I think to myself "Why aren't I stronger, why can't I manage this better?" I don't want to have to p a c e myself. I don't want to have to have rest days but the problem is it's necessary. I can't change it and thinking negatively about it doesn't really help.

At the moment I'm working on forgiving myself and being kind to myself for the way that I handle my pain because sometimes I am ok and other times I am simply just not coping or I'm drained or tired more than usual.  

What's frustrating is that this does not impact my capabilities because most things can be done from a sitting position and after a nap if needed and I find alternative methods for studying on cold weather days.

For example, in college i can use my phone to take notes. I can use the speech to text and correct it where required, which saves me the pain from having to write with tender joints or inflammation.

I can use my phone to take pictures of presentations to be able to write up at a later date, in my own time.

I make sure I have the correct pain management on me at all times and I make sure to take advantage of being able to sit and rest, although sitting for longer periods of time can cause lower back pain with my dislocated pelvis and can lead to stiffness and pain. So I do still have to stretch and stand and when I'm sat down I have to rotate my ankles, stretch my legs, and just keep trying to stretch out the tightness and the pain that the cold weather causes.

My pain management has proven exceptionally helpful because I've been able to pay more attention to my surroundings, (with less distractions from pain) and therefore take in more of the education that's been delivered to me.

I managed to get an extremely positive review in regards to the quality of my work when I did a mock scenario recently.

This shows that I could definitely be an asset to the right sector and I'm academically inclined, pick things up quite easily, have a lot of attention to detail and can be meticulous in making sure that what I do is done correctly.

Going forward, I am going to focus on pacing myself better, continuing to have detox days when I can, being kinder to myself mentally because hating myself for not being able to deal with pain as much as I want to is unhelpful. 

I've got to listen to my body and slow down sometimes because the amount of days rest that I can need after managing my pain to mobilise, can vary.

If you're a little bit of a perfectionist like me, you are constantly hard on yourself, constantly trying to be better, and it can be hard to gauge the fine line between pushing yourself for determination purposes and overdoing it because you're causing yourself more pain.

Even I am trying to find the right 'sweet spot' between them, and with complex conditions it can be very very hard to gauge, if you don't gauge correctly, then you just end up in more pain with a lot of seizing up, swelling, inflammation and stiffness.

Learning to listen to your body and learning to know when you can push yourself and when not to is always difficult.

Here are some tips that I use to get through my day.

If you are hurting at bus stops, and there isn't any seating available, which is more common than necessary, I tend to sit on the floor. 

It is extremely difficult to get up off the floor and I tend to bruise my knees because I need to lean on them to push myself up, then use my stick, then add or pick up any bags I have, however, it is of course better overall to bruise and hurt my knees, than it is to irritate my dislocated pelvis by trying to stand longer than my body is currently coping with.

Take plenty pain management breaks as necessary to keep the pain tolerable.

Use the distraction techniques like listening to music which is why I have headphones on a lot, and when my calves hurt and get stiff in winter season, and seize up, I kinda need to bounce on them a bit just to try and ease the pain. It's sometimes a good idea to just sort of do a bouncy dance to attract or something just to keep your muscles from completely locking up. I also wiggle my toes and rotate my ankles to try and lesson the swelling and pain.

Stay hydrated, drinking plenty of water, and have coffee when needed because dealing with chronic pain is extremely exhausting and I find all I need is a coffee in the morning and one in the afternoon to just try and help me stay awake and have the energy to continue to manage my pain alongside whatever activity or educational activity I am doing.

Job wise:

I think for people like us who are academically inclined, with so much to offer, we're often overlooked because of our mobility issues and it is such a shame.

Desk work, working from home, flexible hours, flexible education/ learning, all are factors which, if implemented correctly can allow us to be an asset to a sector, company, or society.

At the moment the buses do not go into my college and I can't and don't drive, so I had to rely on a classmate to get me to and from college to the bus stop for me to be able to do the educational activity the last two days I have.

In the colder weather I feel that councils and bus companies definitely need to do more to ensure places like hospitals, leisure centers, colleges and schools, and other important buildings either NHS affiliated, health, our appointment affiliated, should all be accessible.

At the moment they are really not.

I use an arriva bus service and it did used to have one bus that went into the college on a morning. This was helpful but it took the long route round and didn't have any additional drop ins to the college.

Because one of the buses comes from the town center, I can't get that without getting a bus to it, so I can't get that one. I have to get the one that's nearby to my home, this was a bus that used to go into the college, but now does not.

I try and get the least amount of buses I need, towards any destination, as it's a lot of extra time waiting around in weather that is basically torture for people like us.

Durham held Lumiere and I really have never felt it was accessible enough to risk it, due to the lengthy walks and amount of space between exhibits.

I think that the company arriva could be doing a lot more to help disabled people in educational settings.

I think they need a bus that goes into the college at least three times per day or at least has a bus that stops at stop *that informs people* that they can get a linked bus service from there to up near the college, if not into the college grounds.

It's something I'm going to be looking into and will most likely write an email to arriva to see what they have to say and see what they can implement to assist.

Fingers crossed for implementing positive change and more accessibility for the disabled, elderly and families.

Thank you for reading my blog, I'm sending positive energies and vibes to all of you, and for those of you with chronic pain conditions, please do look after yourself and just take it a little bit easier, I know it is easier said than done because I need to take my own advice, But I'll try too, okay?

We can do this together !

S.

@Kawaii Doll Decora 🩷✨

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I know you're hurting

I know this week's kicked your butt

But look at you go!

You're achieving everything you set your mind to and you have a better pain management plan in place.

I know it's hard but...

~KEEP GOING!~

(Lickle pep talk to myself and hope it helps others too)

Kawaii Doll Decora 🩷✨

#determination #struggle #disability #disabledblogger #disabilityawareness #pain #endure #survive #paceyourself #workhard #blog