Extra Help - ' Asking for help doesn't suggest weakness, it takes strength.'

 

'The notion that one will decline if they use mobility aids just isn't true.'

Extra Help

With Chronic Illness comes with letting go of one's perception of independence and allowing others to help, a hard task to grasp when a person is hyper independent. I once took pride in not needing others to get by I thought that behaviour was healthy and a positive however with self-reflection I can see how it's a detrimental behaviour. The fact is, it was a behaviour learnt intertwined from my past experiences with Cptsd and a limb difference; one learns not to count and rely on others, instils non safety within others and one may feel like a burden because their basic needs were not met.

 

I at times still struggle to ask for help. I will try to do something whilst struggling and my partner will ask can I please help. I will tell him "I am fine." He smiles and waits in the distance and takes over when I myself realise I am not in that moment as able as I feel I am. He himself can physically see that my abilities are limited and rapidly declining however, he understands that I need to come to the realisation myself within moments and it's also that time for myself for learning to ask for help.

 

Onset I relied solely on my carer to shower me, feed me, carry me to the toilet and every household and parenting task. I felt deep shame, guilt and feelings of uselessness within this period of time; everything was on him and I felt completely useless. He is my full-time carer now and that level of needing a carer by another can feel scary for a person that never could rely on other humans. However, as the years go by I have gotten used to it now and I now have more gratitude for the help he provides rather than guilt-based shame.

 

Extra help can take on many forms and forms you wouldn't particularly think of. You may not view dark tinted glasses as aids, but they provide assistance when a person has visual and light stimuli issues. Loop plugs may not be viewed as aids yet they provide fewer episodes from outside noises. I now feel I have a deeper understanding of the ASD community, the onslaught of stimuli is so much and the only difference is, is that my cognition, speech slurs and ability to walk and function declines. We normally think of the bigger and more physical aids such as canes, walkers and wheelchairs because they are more physical and bigger therefore more noticed.

 

My time at rehabilitation it was heavily suggested and drummed into my head that if I was to use aids such as a wheelchair I would decline even more, 'don't rely on aids they will make you worse.'

 

So within the earlier years I used to use a pram or a trolley as an aid to prop my body up with them to help walk. I did this for quite a few years; I had many moments of collapsing, needing to lay down and it felt so degrading. To be stuck out in public lying on the concrete floor until episodes lessened it was dangerous, degrading and stripped myself of confidence going out. It felt like with every attempt it was just blow after blow after blow. This led to myself refusing to go out due to fear of episodes and being stuck for an hour on the floor, it became a detriment to my ability to go out, my confidence and it created agoraphobic behaviour. My conditions impact my ability to be within society; not using aids impacted that ability even more.

 

I now have an electric wheelchair as I cannot use self-propelled due to my limb difference. At the start great shame was felt, I felt feelings of I shouldn't be using this, I don't deserve to use a wheelchair and the rehabilitations ideas surrounding aids also came back within my mind. Feelings of feeling vulnerable and restricted also came along with using it. It has taken me quite a while to get used to using it, at times that I did need it, I wasn't using it. But with time I started to realise how much it helped my fatigue and symptoms and I was able to get to appointments without being completely wiped out. I now think of it as a time travelling device and I call it the ‘DeLorean’, because without struggle, dropping to the floor and an exacerbation of symptoms previously I'm suddenly at my destination.

 

I still walk around my house, I don't use it to go to my chemist because it’s only a few steps; the notion that one will decline just isn't true.

 

There are also other forms of extra help a big one that we tend not to do is society is ask random people for help; I do now. If I’m feeling dizzy and need to lay at Doctors appointments I ask the receptionist if i can just lay on the floor and they tend to find you a quiet room to lay down. People are actually really helpful, but it's up to us to ask. There have been events that I know I cannot get through due to my fatigue levels and the support in being completely honest goes a long way.

 

I will use an end of the year school concert, my fatigue was at a massive high I was in a really big flare I didn't know at the time that I had contacted some virus. I said to my daughter I'd love to take you but I don't feel like I can, within myself saying that I then thought how can I make this work with the help of others. I contacted her school teacher and explained I could probably only drive to the school, I wouldn't be able to watch but I could stay in the car and at the end of the concert I wouldn't be able to physically collect her. His response back was that's perfectly fine, what i can do is tell you the exact time she's on if you can get out and watch then return back to your car, and when the concert is finished I will walk her to your car. This response was fantastic i did get out of the car and walked bent over and slowly to the grass, I watched her perform she ran and thanked me for watching and it ran smoothly with my conditions helped and supported.

 

We need to remember asking people for help isn't a bad thing and even strangers are quite helpful beings.

 

My perception is vastly different from onset. I remember being at hospital and I had to lay on the concrete floor. Doctors and nurses walked past me and I said to myself "society is horrible." But when I reflect on that experience if I had asked for help within that moment I most probably would have gotten some form of help; my own inability to ask and advocate for myself played a part.

 

As humans we tend to help others with no issue; we find it a natural human thing to do. Yet when the roles are reversed it somehow feels wrong to ask for help.

 

Extra help comes in many forms from carers, NDIS if one is lucky enough, mobility aids, glasses and loops, prosthetics and actually speaking up and asking. Don't feel shameful for needing help at times, we can either feel empowered or disempowered it is up to us to change our own inner perception. And that comes from time and active practice the more one asks for help or the more one uses an aid the more comfortable, empowered and it doesn't come with the previous feelings of guilt-based shame, it also doesn't come with feelings of uselessness.

Light and Noise Sensitivity, Digital, 2022.