Now then, I went from being someone who before I started getting the headaches maybe took a couple of paracetamol a month, normally after a few sociables the night before. This is what I work with on a daily basis now:
You will no doubt have walked away from your first few days after being given your diagnosis with a prescription as long as Gandalf‘s beard, I know I did! This is possibly the hardest thing you will have to manage, the Dexamethasone comes with the most horrendous side effects which to this day 5 months later, I am still managing on a daily basis. Of course it’s good because for me it got rid of the horrendous headaches I’d suffered for months, but what a price you pay for it – muscle wastage, swelling of hands and feet, fluid retention in the cheeks creating a fat face, severe and I mean severe constipation, uncontrollable appetite, weight gain, sleep pattern utterly destroyed which for me, no amount of sleeping tablets has helped with – I haven’t slept for more than 2 hours in a bed for 5 months, stomach pain, acid reflux, nervous mental energy, physical exhaustion. I’m afraid the list for me has been endless, anything you can do to ease this is going to help your morale.
The key to managing all the various side effects as well as feeling like you’re regaining some control over your own life, as I found out through painful experience, was to sit down and read every leaflet, in every box of drugs. You need to understand what to take when, in what order, before or after food, separated by X amount of hours, morning, evening, four times a day, without dairy products – there are some funny ones in there! The list again is endless but you’ve got to get a grip of it and understand what you’re shoving into yourself, it’s to your own advantage.
If you don’t do that, then on top of dealing with everything else, you will make yourself feel physically very unwell, on top of any symptoms you were already getting. You’re morale will already be low, this will in turn make it even worse. The big one for me was to not take Dexamethasone after 12pm as mentally you will be turbo charged for 12 hours afterwards! If you only read up on one drug, make it this one!
The two other things you will need are an understanding and helpful GP – drugs will need tweaking, doses adjusting and new problems will develop as side effects of the drugs you’re already taking – for me, severe constipation, bladder infections and oral thrush, inability to sleep – what a barrel of laughs! More than anything I was becoming so tired and confused that I was forgetting what to take and when. Luckily my amazing wife Kady drew up a drugs chart for me which I have continued to adjust and amend as time has gone on. This is the second thing you must have, I utterly rely on it every day.
It has also proved useful on days out, no more remembering what drugs to take with me, the chart does that. Hospital trips in particular, they will probably not know what your GP has prescribed you and vice versa. I always take a copy with me and they look suitably impressed when I hand it over. Kady and I have also found it useful to take on emergency admissions to hospital and visits to and from emergency Doctors. It’s not happened yet but if we ever need to call an Ambulance our plan is to shove a copy in the hands of the Paramedics, that way I would arrive at the hospital and if incapacitated they would have something to refer to.
So not only has it proven incredibly useful to me, it also ensures there is no confusion or misunderstandings in the minds of the medical fraternity as to what I’m on. Clearly I have a vested interest in this as it means I’m getting the best possible treatment and also minimising side effects.
My gift to you, again ‘Without Prejudice’ please use and adjust to whatever suits your purposes and don’t trust my comments on what the drugs are for, you may have been given them for a different reason, READ the leaflets: