Additional Needs

A Life of Logistics and Anxiety

Posted by Ceri-Ann Brown on 18th October 2021 Additional Needs, Disabilities

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I am an introvert. It may not look this way from reading my blogs, speaking to me on social media, or indeed even in person. But the truth is I mask a lot of my anxiety, or I let it come out in my writing.

I need a lot of time to be introspective. I don’t deal well in crowds. I stumble on my words and don’t know what to say when meeting new people. I find comfort in podcasts, music and books… not nightclubs, parties or anywhere that is generally busy. I love being home. Being home now is more than just about comfort - it's where all of the equipment is that we need for Amy that keeps her safe and allows us to transfer her with ease. Any trip out we take is adding risk because we just don't know what to expect from the world in terms of accessibility. Things have to be more carefully planned now.

Over the last 7 years, I have really been pushed out of my comfort zone. This week alone I have met at least 30 people I have never met before. We had a two-day stay at a hospice we have never been to, we’ve had meetings at our house about different aspects of Amy’s life, and we’ve had an afternoon at the hospital for medical tests.

My mind right now feels cloudy. I feel a bit emotionally and physically drained. I have this annoying tendency to ramble, focus on negatives, or overshare. It’s completely inadvertent and afterwards, I am left feeling silly and angry with myself. This will then trigger my overthinking and add to my insomnia. Sometimes living in your own mind is hard. I catastrophize constantly; imagining the worst-case scenario so vividly that it almost seems like a very real inevitability.

Yesterday we had an appointment at the city hospital. Coronavirus rulings have made it so that a lot of our appointments mean only one adult is allowed to attend. I often take someone else with Amy and I just so that I can concentrate on what people are asking/telling me, for extra hands for physical help with Amy, but also for moral support so I feel that I can handle everything.

When we have any upcoming appointments I obsess over it for days. I envisage the journey there, how we will park, what we need to take, how long it will take, what I need to ask/ensure happens. I account for almost every possibility. I pack copious amounts of things… you know, just in case. I then worry that I haven’t packed the right things or got the right day. I then beat myself up wondering why I am getting so het up over a simple appointment. Something we have done so many times before and will do so many times again.

Recently my anxiety has upped itself a bit. I get nervous at every phone call or email. For some reason, we’ve had a lot of disappointing news this year and now I associate people contacting me with something bad happening. So I have started to do more guided meditation, and try to breathe more and think before emotionally reacting. In theory, it all sounds amazing, but the reality is very different. We have had so much going on recently in all aspects of Amy’s life. We’ve had so many appointments, SALT, OTs, physio, neurology, dieticians, gastro, epilepsy specialists, housing, hospice/respite processes etc. For anyone, it’s a lot to take in and each area carries its own pressures and expectations. Sometimes I just want to be mum, I don’t want to need this constant barrage of appointments and calls. How Amy takes it in her stride so well I will never know. All we needed yesterday were routine bloods and a urine sample from Amy. Sounds simple right? It isn’t life or death, but these things are still important.

The trip to the city hospital is tough in rush hour, and parking can be a nightmare. I had of course accounted for this and arrived at Amy’s school earlier than necessary to pick her up. So I decided to sit in my car for a few minutes to try and regulate my nerves. Initially, I turned the air-con up in the car to cool me down as I was a bit hot with anxious energy. I then decided to send an important email I had been meaning to send relating to Amy’s recent increase in seizure activity. 

Just as I felt myself begin to feel organised and calm, there was a knock on the window. “Can you turn your engine off please. You are polluting the environment and my windows are open”. The lady had just parked her car on her drive and came to tell me off. I can’t stand confrontation and was too shocked to properly respond. I couldn’t believe I was sitting minding my own business and now being told what to do by a perfect stranger. Cars constantly park by my house making loud phone calls etc and I wouldn’t even dream of telling them off! It’s their life, their choice. I have bigger problems in life than someone else’s cars. I explained what I was doing and she actually apologised and walked away. But by this point, my anxiety had soared again. (I have since found out you actually aren’t legally allowed to sit with your engine on in a stationary car, but the point is neither here nor there; the point is let people be… stop focusing so much on what others are doing and go and live your own life. Obviously, I do care about the environment, but much of our life involves calls and emails about medical issues and on this occasion, I felt what I was doing was justified.

Feeling flustered and unable to shake my anxiety, we made it to the city hospital in good timing. I tried not to notice the two cars next to me without disabled/blue badges in the disabled bays (waste of emotional resources) and we ventured up to the ward. Straight away I was expected to lift my child to get her height and weight. I was expected to lift her again to put gauze in the pad for the urine sample. In total for the appointment, we did about 5 transfers, all whilst leaning down onto a very low changing table.

I asked why we weren’t using the hoist. Apparently, even though it got serviced, it isn’t working. I explained that sorry this isn’t good enough and that my child is only getting bigger. I have been told more times than I care to remember to look after my back. How can I do that when a city hospital… specialising in complex health and disabilities, can’t even meet the most basic needs for families like ours? Admittedly their outpatient's dept does have a hoist but this was an entirely different space, one where children with mobility needs are expected to go in and out of their chairs regularly. Obtaining urine is always tricky. I tried giving Amy so much extra water. We waited almost an hour and went to check. Not even a drop.

The staff said maybe I’ll have to just try and get it at home and drop it off. I burst (unexpectedly) into tears. There is no "popping in" anywhere in our life now. Everything is carefully planned. There are many factors to consider before even leaving the house. It's almost as if the stars have to be aligned to allow a trip even to the supermarket at times. I have to consider accessibility, Amy's health, my anxiety and energy levels, appointment clashes and many other things. We never just "pop out". We are not in the days of grab your phone, purse and keys and off you go. There is much more to it than that.

People don’t realise just how much stress and energy was used up in trying to get us to this appointment. When you have anxiety, sometimes the most simple things are made difficult. I know it’s irrational, but sadly that’s how it is. I said no, we need to do this now. My back is so sore, and I don’t want to have to keep coming back. So we waited another hour. Lifted her onto the bed again. She had somehow managed to wee around the gauze and into the pad!! Exasperated, I admitted defeat but explained I wouldn’t be returning until we have a longer clinic appointment and we are downstairs where the hoist is and have more time. I do get emotional and frustrated when Amy’s physical needs aren’t being met. It makes me wish we never left the house. We have what we need to do a safe transfer here. 

When I cried I saw the staff look surprised as if to say “why are you crying?!”. In retrospect, I do feel a bit ashamed. But it was all that pent up stress about having to once again poke her with needles and interventions, knowing she may not understand why we are doing it. She was missing more school time, we had a journey back in rush hour ahead of us, I had no one to help me physically or to help keep me calm.

Sometimes those tears come at the most inconvenient time. Sometimes the weight of it all takes its toll. Every day we deal with serious things such as seizures, housing adaptation issues, concerning gastro problems, respiratory illnesses requiring lots of intervention etc. So every now and then, a lady complaining about my car, or an unsuccessful urine test is enough to tip you over the edge.

So if crying over spilled milk has reduced you to pitiful tears and wanting to curl up in a ball under a blanket today… you are not alone. You can do this. Have a cry, have a nice drink, and get back to it.