Drugged up to the eye balls:

I know I take a lot of medication; there is a huge box at the end of my bed that reminds me of it daily. Three things serve to remind me that these drugs are not a walk in the park

• I carry two cards to warn people in an emergency that I am taking two separate drugs; one lifesaving and one that be fatally toxic
• I have a barrage of testing to monitor the extreme side effects, from regular blood tests and ECGS to the instruction to attend A&E if I have concerns.
• Lastly, my GP and pharmacist have both said to me ‘I have no idea how you are walking up straight and talking on this amount of meds’ (neither do I but please take 5 mins to marvel that I do!)

For those of you in the know, I take the highest doses I can tolerate of pregabalin, lithium & verapamil as well as pramipexole and hydrocortisone.  Then when times get really hard indomethacin & prednisolone when needed. Not all of these drugs are friends with each other so I sometimes feel like a preschool teacher trying to make them all get along!

The main side effects for me have been mainly cardiac. You never forget the first call you get when your consultant himself rings to say your 24hr ECG study showed that your heart had a number of brief pauses overnight… It did what sorry? Is that safe? Am I ok?... then when you get off the phone, your legs go from underneath you and you sob for an hour.

Now my meetings with the neurologist and/or cardiologist are more based on ‘so the pauses are no more frequent and no longer than they were… good… then let’s carry on as we are.’ Have I become complacent? I don’t think so, if I stop to think about it long enough it scares the wotsits out of me. I think I have become used to it… my 45bpm heart rate was the focus of much intrigue during my emergency admission last weekend, but that’s me, that my new normal. If it was ‘normal’ there would be more cause for concern. It did serve to remind me that that’s probably part of the reason I’m so tired all the time.

Many of you who know how ill I still am regardless of this drastic drug regime will wonder if it’s worth it or not… IT IS! I’ve tried to not take them, I argue with shell at least once a week and beg her not to make me take them… but I know what happens when I don’t. The hell I experience without them makes today look like a holiday in the south of France! My only sadness is that the combination of medication I’m on makes pregnancy impossible for me (a topic I’m sure I’ll tackle on here when I’m strong enough). People questioned why I didn’t stop taking the medication, even if it was just for 9 months… simple, without them I may be able to have a child but I would not be able to be a parent.

I couldn’t tell you today what side effects are what drug or even if they are the drugs. I know you would be hard pushed to find another person who takes the same meds as me for the same amount of time, in the same doses for the same condition to tell me what the long term effects on my body are likely to be… but I’m not thinking long term…you cant.

I trust (because to do this you have no choice) my neurologist and I trust pharmaceuticals. I’m educated enough, I grew up the daughter of a biochemist and I studied psychopharmacology at university, I know that all medications are just merely helpful toxins. Apart from the steroid’s I take to replace the steroids not being naturally produced everything else I take is not supposed to be in my body.

I’ll take the tablets, I’ll get injected in the face, I’ll sit with an oxygen mask attached to my face… I’ll do anything you ask, just take the pain away… Please.