I didn’t intend to make this blog as personal as previous ones but I feel this could be a useful tool for education so here I go.
I have a number of health problems: depression, anxiety, irritable bowel syndrome, acid reflux, misaligned patellas, eczema, and now soft tissue damage to my back and neck after a car accident. I also have learning difficulties. My partner is my main carer. I’m going to make a list of a load of things I rely on him for because of my medical needs. I’ll put them under headings I guess to link them to particular disabilities. Obviously some of them overlap though.
Getting me out of bed on a morning, or afternoon if that hasn’t been successful (which is often).
Stopping me from going back to bed after I’m up – not always successful.
Not allowing me more than one nap a day and limiting that to 2hrs long.
Reminding me and encouraging me to take my medication and make relevant appointments.
Collecting my prescriptions at the docs/collecting medicine at the pharmacy.
Ensuring I eat and drink. This often involves making me meals and drinks and bringing me them and sitting there to make sure I eat them.
Keeping in contact with me as often as possible if we’re not together to encourage me not to harm myself.
Encouraging me to do uni work.
Dealing with me when I’m in particularly bad depressive episodes. This includes wiping away tears, spending literally hours consoling my worries/fears and trying to make me think more positively, giving me relevant medication, cuddling me, removing anything I could potentially harm myself with etc.
Encouraging me to maintain personal hygiene.
Encouraging and helping me to take care of my skin to try and avoid lots of eczema flare-ups, and then helping me treat them with steroid cream when they do happen.
Making phonecalls for me (a much bigger task than it sounds – as you can imagine I have a lot of health appointments to make).
Chaperoning me – this can include doctors appointments, shopping trips, social occasions, whatever I otherwise would refuse to do because of not being able to leave the house due to anxiety. This can also frequently include taking me downstairs in our own house if I need to get a drink or use the bathroom and am too anxious in case other housemates are downstairs.
Encouraging and reminding me to take the correct medication.
Spending time to tackle and assess my anxious thoughts to try and dispel some of them.
Dealing with me in the midst of a panic attack. This includes holding me to make sure I don’t fall/pass out due to dizziness, helping me to control my breathing through breathing exercises, allowing me to squeeze his hand to stay conscious and aware of what’s going on, telling me positive thoughts to hold onto in my head, wiping away my tears, getting me relevant medication, sitting me down so I don’t fall, taking me to a quiet location away from everyone etc.
Irritable Bowel Syndrome
Reminding and encouraging me to take the correct medication.
Massaging my tummy when it’s sore or messed up.
Making me peppermint tea to help my bowels when I have a flare up.
Running about after me when I’m bed-bound due to the pain. This includes getting me food and drink, doing any chores that need to be doing, getting me heat patches or heating up my wheat bag to use for the pain, improving my mood, getting me medication.
The exact same things as above. I can have IBS flare-ups at the same time as acid reflux flare-ups. I can also have them separately. Pain from acid reflux can be so severe I need monitoring though in case I need to go to A+E because it can potentially be something more serious. Also this requires more monitoring in case I vomit.
Knees and back
Waiting outside the bathroom when I have flare-ups to make sure I can get on and off the toilet without falling and hurting myself.
Massage for pain and stiffness.
Reminding and encouraging me to take my medication properly.
Allowing me to rest them – this obviously involves doing a lot of stuff I can’t do without hurting them further. For example doing the laundry, cleaning the bathroom, well most of the cleaning work, any heavy lifting like carrying shopping or laundry or whatever, packing suitcases, putting away lots of things/tidying that would involve lots of bending.
Basically I need help with anything that involves a lot of co-ordination, or numbers. Examples include timing cooking, timing myself so I’m not late for appointments/uni, making sure I know what time my appointments and things actually ARE as I have difficulties with the 24hr clock, managing our finances including bills and overdraft debt when that crops up etc.
This is by NO means an exhaustive list. I have to rely on my partner to do all of these things for me if not daily then at least a few times a week. It’s not fun, but I haven’t wrote this up for pity. You would not be able to tell by looking at me that I can’t do all these things and that I have to rely on someone else to do them. Some disabilities are ‘invisible’ like this. I just hope it will educate people about how these illnesses can affect people and how the effects aren’t always so obvious to other people from the outside.