Unless I have an early start, in which case I do everything an hour earlier, I tend to have a regular routine that I follow each morning and evening. My spinal cord injury and everything associated with it determines that I need care 24/7.
My body is very in sync with my routine, even down to the fact that I sleep through my shower, as that is my way of dealing with the fact that I needed personal care.
My morning routine takes roughly 3 hours from my wash to when my nebulisers finish.
7.20am – I use Peristeen every morning as I feel that is the best time for me. Over the last 12 years, I have tried doing it on an evening but my body seems to respond better to the treatment in the morning. I started using Peristeen 8 years ago after using Micralax enemas for the first few years, which didn't always work very well for me. I was often left without my bowels emptying for days at a time. I have to admit that originally I wasn't too keen on switching to Peristeen (which works just like colonic irrigation), but on doing so, I found it to be more dignified and much more successful at emptying my bowels.
8.30am – When I was designing the layout of my purpose-built bungalow, I had the space to have either a bath or a shower and I chose to have a shower. Whilst I was in the spinal unit and rehab centre, I had tried using a shower chair and a bath. Whilst the bath was my preferred option before my SCI, it just wasn't as relaxing when you need to have someone in the room with you to keep you safe. I just found that a shower is the most practical thing to have, and as long as I can wash my hair and body easily, that's good with me.
9.15am - As I don't move around like an able-bodied person my body gets extremely stiff (in particular it can be really hard to bend my arms etc. when we're getting me dressed), so I have a set of stretches and passive movements for all four limbs that my physiotherapist has set. These daily stretches can be done twice a day by my Care Team, and along with my weekly physiotherapy sessions, they keep help my body from becoming too rigid.
One hour on my side for pressure relief – Pressure relief is one of the most important things in my daily routine to help prevent pressure sores. I have had pressure sores before which have resulted in my needing six weeks of 22 hours a day side-lying, and that was no fun at all! I pass the time on my side by watching TV, listening to music, having my nails painted, talking with my care team about plans for the day and choosing my outfit out for the day. I am often guilty of falling back to sleep if I haven't had the best night's sleep during this hour!
10.30am – I have a saline and salbutamol nebulisers each day. These nebulisers help to loosen any secretions that are in my lungs which my cough assist and suctioning helps to bring up afterwards. I then have my breakfast and morning medication.
11.30am – I normally try to go on my ventilator for 4 hours each day, but if I am feeling unwell, I will go on it for longer. Using my ventilator gives my body a rest as, although most of us take breathing for granted and it doesn't have an impact on your body, it tires my body.
The steps it takes to get me up and out of the house
Get me dressed
Put the sling underneath me
Hoist me into my wheelchair
Lean me forwards to put the gel pad on my back (it goes on the bony part of my spine and helps to reduce a pressure sore) and then pull my top back down
If I were putting a coat, wrap or cardigan, I would put it on at this step
Make sure that I'm sat straight and don't need a shuffle
Click my lateral supports in (these prevent me from moving too much)
Put my lap belt on
Lean my wheelchair back a bit and put my harness on (this keeps me sat up straight as I'm unable to hold myself up)
Do my hair and make-up if I'm going out somewhere
Put my headrest in and make sure that my chin control is in the right position for me to control my wheelchair
During the day I will often take my dog Poppy out for walk and I normally see my Grandad when he pops round for his daily cup of tea and a catch-up. He also comes for tea once a week.
Work-wise, I normally do two talks a week depending on what we have in the diary, and in addition to this, Rebecca and I will try to grab a few hours a week at my house to get any admin tasks done. We also have a few hours a week where we are working virtually together from each other's homes. Once we have our new office, we'll be able to physically work together a lot more which will be great. With the office being based at my house, if I need a rest, I won't have far to go!
When I'm not working, I enjoy shopping, going to the cinema and spending time with my family and friends. Everyone feels better having a purpose and a focus in life, and I find it so good for my mental health to have a reason to get out of the house, even if it's just to get some fresh air walking my dog. For a long period of time, I could spend days stuck in my bedroom glued to my TV, and once I got out of that habit, I felt much happier.
8pm – I put my saline and salbutamol nebulisers on again. My nebulisers normally take 1 hour and after that my Care Team will do my cough assist and suction as they do in the morning. If I haven't been on my ventilator for 4 hours during the day, I will finish the rest of the time off during the evening. If I am having a quiet day if I don't have a talk etc. to attend or an appointment I will try to do at least 3 hours on my vent in a morning and leave just 1 hour to do with my nebulisers on an evening.
9pm – I take an Amitriptyline tablet which helps me to sleep.
11pm – I have the rest of my medication and a small snack. I am somewhat of a night owl, so I tend to watch a film or TV programme with whoever is on the wake night if I don't have anything planned for early the next day.
Midnight – My Care Team turn me onto my side. I sleep on my right side for 4/5 hours through the night and will go onto my back after that.
I have learnt over the years that establishing a good routine is one of the best things you can do to look after yourself and your health. For years there wasn't much of my life that I did have control over, so having a well-established routine was something that I could control. Having a set routine also helps my Team as everyone knows and is confident in what we do on a morning and evening. If someone has been off for a period of time or if we have a new starter, it's easy to pick up.
The best thing I can say is to find a routine that works for you. It takes a bit of getting there, but you'll know when you've got it right!