Day 16
So, I mentioned yesterday I had therapy and that it went well and I am really glad I am sticking with it and making the effort to continue on with it long term regardless of how hard it gets or how much my therapist challenges me (you can see a general theme here of ME, ME & ME can't you?). When I came out of session I was waving Adam in as he had to fix up the bill but he sent my eldest daughter (18 next birthday, yes I know that's another whole 300 blogs right there!) to pay which I thought was a little strange. She looked uncomfortable then preceded to tell me that Dad was running on a low and was currently at 3.1 and for the first time EVER he forgot to put his jelly beans in his pocket and hadn't yet replaced the ones in the glove box of the car.
A type 1 diabetics emergency friend tends to be jelly beans (well Adams is anyway) My partner keeps one or two sets of 6 on him at all times in his pocket, one in the kitchen, one in the lounge room, one in each of the glove box in the cars, one on his bedside table, one in his lunch bag for work, one in his dinner bag, one in his nightshift bag and one in his locker. He must remember to replace them when his used them in an emergency on a low (which is a lot easier said than done when you feel confused and sick) or the next time he will be stuck with no emergency exit from his low and this could be disastrous.
Which is what happened yesterday. When Leah told me he didn't have any beans on him I asked my therapist if she could get me something sweet like an orange juice. She didn't really have much, none of her colleagues had any sugar lollies, I must admit I could feel my heart rate increasing and I was starting to worry. After scurrying around for a bit out of sheer desperation she put a teaspoon of sugar in a glass and we took off to the car armed with her tub of strawberries. This did the trick enough for us to head to the nearest shop to get some juice to ensure his levels were ok to get us home as naturally with my neck in a brace with fractures I also, am unable to drive, I can't even have my 17 year old put on her L plates and drive as I am unable to assist her with no neck movement allowed.
In amongst my own daily challenges and obstacles with battling the symptoms of PTSD, arthritis and now my physical injuries I've tended to forget Adams daily struggles and how hard it is for him to manage his type 1 diabetes and all the daily challenges that comes with being insulin dependant and in such a high stress physical job that involves constant rotating shift work, dealing with a partner he once truly loved with all his heart now battling PTSD most days and on bad flare days struggling to do simple daily tasks after a bad palindromic flare and now physical injuries after a bad cycling accident.
It's now 5.57am and his just got up. I can hear the rattle of the bag in the kitchen and him counting out beans. His woken from a deep sleep on a low and there is nothing I can do to help him. He just chews away at his beans and shortly i'll hear him scurry, heavy footed from being overtired, back down the hall back to bed to get some more rest. He has always loved his sleep and has never had trouble getting plenty of it but now its very much a case of needing it to stay well. If he only manages 6 or so hours we all know to steer clear of him for the day as his very short tempered and has been the hardest thing for the kids to deal with. He was always an extremely patient man (he must have been to stay with me for 25 years without going mad himself) very even tempered and never quick to anger but the diabetes has taken that away from him. He can't always control his emotions, similar to me with the PTSD, its like a rollercoaster and your bodies fighting against itself.
He wakes sometimes especially if his had a hard training day at work in severe leg cramps. Never complains but I can tell his in agony. Again, there is little I can do, often with my wrists and hands swollen and sore to move from my Palindromic Arthritis I cant even offer to massage them for him. Its so frustrating. He has finally found something that has made his quality of life a lot better and his ability to work in a high stress, physically and emotionally demanding job that often leaves him on the road more manageable being dependant on insulin to keep him alive. He was told to trial a new sensor that enables him to eliminate all the manual finger pricking and see what he thought.
He did and he hasn't looked back, it has been life changing. Not only for him but for myself and my three children as he is almost back to the Adam we knew. Through being able to monitor his blood sugar levels, he is better able to mange his job, his moods, his diet and exercise to keep himself well and healthy after the first year taking its toll. The biggest thing with Type 1 is managing his stress. Living with someone with untreated PTSD is highly stressful and although he doesn't want me to say what he does for a living I can tell you ironically he works for the government. See, they don't even look after their own. What do I mean by that? They pay just above minimum wage and to earn extra money they rely heavily on constantly changing shifts and penalties, again something that makes symptoms of PTSD hard to manage.
He has finally found something that makes his life just that little more comfortable and easier to manage. I can imagine your reading this thinking this is fantastic, why are you sounding so negative and why are you bothering to write this blog if he can manage it better, you and the kids are happier so what's all the fuss about? It costs. It costs a lot for a family of 5 on 1 average income. The sensor that helps ensure his daily life is more comfortable and he has one less stress on his plate costs him currently $92.00 per fortnight on top of all his other medication that isn't currently covered by the PBS, even Magnesium tablets that ensure his daily cramps are manageable are costly. Add that onto my daily arthritis medications, the cost of therapy to manage my PTSD because I do not qualify for proper in hospital treatment for 6 weeks as an inpatient, as a family to stay alive and well we currently fork out well in excess of $200 per week.
To have the FreeStyle Libre Blood Glucose Sensor free would be life changing for our family, so I challenge the government in this lucky country we live in (yet we are denied basic life saving equipment) to put this on the PBS and make living with type 1 diabetes just a little more manageable.
Anyone who is thinking if your on 1 income why don't you get a job? Ironically I spent 12 months applying for a job within the government but was knocked back due to my mental health status (ie PTSD) despite being more than capable to do the roll and it would have made the financial burden on the family more manageable. Since being knocked back I have followed my passion of nutrition and have been studying and also following my passion of running, becoming qualified to coach and support others with a passion to learn for fun and fitness.
So, to my most amazing partner and best friend in the entire world, this one is for you honey. I love you to the moon and back and because you have stood by my side through everything this is the least I can do in return. xoxo
Today I am grateful my arms work so I can write this blog.
would like to share this but wont allow
ReplyDeleteOh that's weird carol. I can forward it to you via FB if you'd like?
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