Been doing a lot of that of late. Living life. Enjoying myself. Refusing to be beaten.
I have been gently back at work. Limited hours and with lots of risk assessing and breaks etc. Management and colleagues have been nothing short of wonderful.
So many have willingly learnt a bit more about my condition, and happily ‘babysit ’ me, letting me sit in their office so I’m always safe with other people around me. Unfortunately, despite anti seizure medication, I now live with epilepsy, and there is always a small risk of a seizure. For this reason I cannot be in an office alone at work. Fair enough. We have Risk Assessments and an amazing list of volunteer ‘health buddies’....... I have been completely humbled and grateful to colleagues willing to have me sit in their office without totally freaking out at the thought that I may randomly start having a seizure!
In reality this is highly unlikely to happen. In 15 months I’ve had half a dozen such incidents. But it can happen and I’ve been completely in awe of the number of people who take that in their stride. ‘What do we do if it happens? Dead on. Yep, sit in with us.’
By working together with me, the organisation gets to keep a staff member who wants to work and who can still add value. And I get to maintain a life where I still have some independence but where I’m not being patronised or treated like I have nothing to contribute.
I still love my job and I want to work. I have limitations, but we are working through them and it’s been great! I’ve been working reduced hours, safely with others around me. Very much moving forwards and feeling very content.
I’ve also been doing more outside of work. I’ve attended a few gigs...... nothing too noisy or busy, but it’s been nice to have that bit of our lives back a bit too. I’ve been spending time with friends.
Realistically I can live with this tumour for decades........ it has to be a life worth living!
So I’ve been hugely positive and very much living and loving life!
I’m willing to accept I got a bit carried away........ particularly over the past week with birthday celebrations and preparing for some lovely time off and a rest over Easter.......
Plus I picked up a sinus infection. I suspect it’s been working for a while, but I thought it’d sort itself out.
Unfortunately last night the sinus infection, doing a bit too much and birthday excitement all merged together......I was shattered so I duly warned hubby I was feeling a bit ‘off’ and went to bed early. Sensible. We both expected I’d fall asleep early and wake up today feeling a bit better again.
I went to bed early but then came over very weird...... I knew what was coming..... unfortunately hubby was in the other room when the first seizure struck........ It was a small one....... I was conscious but not in control of my muscles....... twitching, particularly in my face....... The same as has happened to me before, but this was only the second time outside a hospital environment.
It’s difficult to explain the fear that comes with an incident like this. Despite me knowing this is going to be part of my life with a brain tumour, and despite having experienced it before, there is little doubt that a seizure is a horrible thing to go through. Particularly alone........
Although I wasn’t alone for long. Poor hubby got the trauma of me banging on the glass panelled door into our kitchen....... having crawled up the hall like something out of ‘The Ring’........ Then he got to dry my tears as i cried like a baby over the whole sorry affair.
Doctor on Call cautioned against doing too much, but was content it was a minor seizure and I was all ok.
Back to bed. In terms of energy expended, having a seizure is equivalent to running a marathon apparently. I’ve never run a marathon, but I can definitely confirm the pure exhaustion resulting from a seizure.
Hubby came in and sat with me so I’d feel more secure. Then the poor guy got to watch me do it all again an hour later....... This time he rang an ambulance. We know this isn’t really necessary with these small seizures. They last 3-4 mins at most and my biggest danger is probably from potential falls rather than the seizure itself.
But I can completely understand why a witness would instinctively ring ’999’.
So what was the outcome? Where do we stand now? Reality is that absolutely nothing has changed....... I have been fighting a sinus infection, I've done a bit too much and I didn’t speak up in time...... I had two small seizures as a result. I am now on antibiotics, have learnt a valuable lesson and am reminded that my husband is a complete saint.
I have to be able to have a life. The support of my friends, colleagues and particularly family, allows me to do this.
I remain absolutely certain that the right attitude will be what carries us through this whole thing and keep me alive and well for many years to come.
But I have to work really hard at slowing myself down and not pushing too hard.
Equally, I cannot sit around all day, waiting for disaster. My mental state of mind is as important as my physical...... the two are intrinsically linked.
Yesterday was my birthday. 43 years young. I have been building up to it for a week! Looking forward to some fun plans and also about to take some quality extended time off with hubby over Easter. I got carried away and I didn’t look after myself well enough.
Moving forwards? We’ve put some extra safety measures in place at home. I have had a good cry and let myself be thoroughly pissed off at the setback. We have brushed ourselves off and picked ourselves up. We have reminded ourselves that I may have the odd seizure, particularly if I get run down and/or over tired.
In the short term, I am working on getting this infection lifted and am resting up.
Longer term I’m continuing to work hard on my mental and physical fitness levels. But I’m not being a hero......... if I’m tired, I will rest up. Equally I am not lying down every day and waiting for disasters. I will remain determined and I will gently push...... but in a safe and sensible way.
Now we go back to living a happy, positive life. Everything is really the same as it was before. I am living with this thing. Like so many others. I am doing it with the love and support of an incredible group of people.
We are winning. Living with........ xxx
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