Stock taking
This morning, taking stock of my medicine cabinet (downstairs) and stash of prescribed pills (upstairs) and putting them all together on the table, to list what is left and what needs to be re-ordered today.
This is complex, because on the writing pad in front of me I am mixing words and numbers, and confusing totals of drugs left (in numbers) with number of doses left (in words) and how many week's worth of doses are left, in order to make diary notes of when they need to be re-ordered.
The ten different prescribed drugs are taken at different intervals; some hourly, some daily, or weekly, some every day of the week, some only on certain days of each week, some only once in a blue moon.
The surgery has a policy of not prescribing more than four week's worth of drugs at any one time. I loudly protested at this, as four week's MTX equals 16 tablets, but MTX should be prescribed in its original packing, of 28 tablets, with the patient information leaflet as there is DANGER OF DEATH if it is accidentally taken daily instead of once a week, and my Employer's Liability Insurance has fairly strong clauses about my responsibility to provide a safe working environment, which I say includes safely stored drugs. You never know, with some of the home helps I have had to look after over the years.
I am despondent because I am finding it difficult to stock take my drug stash, when it should be relatively easy, and I feel physically tired, when this is the first of three or four good days that I should be having this week. There are lumps of lead on the back of my neck and top of my head, which are dragging me down. The molten lead over-coat, which is not just heavy but hot, which is my description of my systemic inflammation, should not be draped over my shouders today, as the weekly low very low dose of chemotherapy MTX should have dealt with it, for now.
Then I find I have half a dose of MTX left, which should not be there in the packet.
Eureka.
Comprehended.
I only took two pills on Saturday evening, instead of the dose of four. Why, because I was cogdysfunck'd probably.
Which is why I felt unusually bouyant on Sunday and Monday, with energy I don't usually have on those days because the MTX makes me feel brain tired, therefore a bit down emotionally, and physically drained, but this weekend it didn't. At the time I thought it was all the adrenalin from BADD. BADD was, is, brilliant.
Yesterday I felt emotionally and physically down, which I thought was because I had done more physically over the weekend when I should have been resting during the time I have the MTX in my system. For me, physical fatigue = brain fatigue and conscious effort is required to feel and be positive.
So relax Sally, give up, stay in bed blogging. You silly thing, you only took half a dose, so you will feel only half alive this week, and can only do half of what you were expecting to do, and will only be half as positive as you usually can manage.
Don't worry, this too will pass.
Give yourself permission to give up on a lot of what you should be doing this week.
Instead, spend time reading all the BADD blogs and feel BETTER.
This is complex, because on the writing pad in front of me I am mixing words and numbers, and confusing totals of drugs left (in numbers) with number of doses left (in words) and how many week's worth of doses are left, in order to make diary notes of when they need to be re-ordered.
The ten different prescribed drugs are taken at different intervals; some hourly, some daily, or weekly, some every day of the week, some only on certain days of each week, some only once in a blue moon.
The surgery has a policy of not prescribing more than four week's worth of drugs at any one time. I loudly protested at this, as four week's MTX equals 16 tablets, but MTX should be prescribed in its original packing, of 28 tablets, with the patient information leaflet as there is DANGER OF DEATH if it is accidentally taken daily instead of once a week, and my Employer's Liability Insurance has fairly strong clauses about my responsibility to provide a safe working environment, which I say includes safely stored drugs. You never know, with some of the home helps I have had to look after over the years.
I am despondent because I am finding it difficult to stock take my drug stash, when it should be relatively easy, and I feel physically tired, when this is the first of three or four good days that I should be having this week. There are lumps of lead on the back of my neck and top of my head, which are dragging me down. The molten lead over-coat, which is not just heavy but hot, which is my description of my systemic inflammation, should not be draped over my shouders today, as the weekly low very low dose of chemotherapy MTX should have dealt with it, for now.
Then I find I have half a dose of MTX left, which should not be there in the packet.
Eureka.
Comprehended.
I only took two pills on Saturday evening, instead of the dose of four. Why, because I was cogdysfunck'd probably.
Which is why I felt unusually bouyant on Sunday and Monday, with energy I don't usually have on those days because the MTX makes me feel brain tired, therefore a bit down emotionally, and physically drained, but this weekend it didn't. At the time I thought it was all the adrenalin from BADD. BADD was, is, brilliant.
Yesterday I felt emotionally and physically down, which I thought was because I had done more physically over the weekend when I should have been resting during the time I have the MTX in my system. For me, physical fatigue = brain fatigue and conscious effort is required to feel and be positive.
So relax Sally, give up, stay in bed blogging. You silly thing, you only took half a dose, so you will feel only half alive this week, and can only do half of what you were expecting to do, and will only be half as positive as you usually can manage.
Don't worry, this too will pass.
Give yourself permission to give up on a lot of what you should be doing this week.
Instead, spend time reading all the BADD blogs and feel BETTER.
posted by Sally at 12:47 am
5 Comments:
That kind of stock taking sounds like a nightmare! there are all kind of clever computer programmes around, doing the most silly things one can imagine. Isn't there a clever little programme suitable to help you with your stock taking? Knowing myself, I am sure I would mess that up completely! anyway, hope you enjoyed reading the BADD posts.
The four-week scrip limit is a nonsense. Governement guideline is that there should be a three-month limit to avoid over prescribing of drugs (a) in case they are found to be unsuitable (b) in case the patient dies.
This is to save money.
Drugs cannot be returned to pharmacy, surgery or vet for re-use any more because the way they were kept during the interval cannot be ensured, therefore they might have deteriorated.
I have heard of people on HRT and other long-term maintenace drugs who have been required to order their stuff monthly if they belong to one practice, but three-monthly if they belong to the practice over the road. Ridiculous!
Try not to push yourself, having missed a dose - you know what fatigue does! Best wishes and I hope you feel better soon.
Bloggingmone, bless you and thanks, you would think it could be simpler; if there was a programme, I would have nightmares (or Dragons) trying to input the data - or read the data !
Charles, your forthright statement of what should happen is power to my fight - I will tell them this, again. But I'm on their Patient (impatient patient) Participation Group,and they know that I know that last year they had to throw out £10,000 worth of unused drugs returned by patients. So their own policy is to restrict to four weeks, not three months, so I totter on.
It is lovely to have feed back. Life is transformed by these blogs.
One thing we have done is to order repeat prescriptions slightly earlier each four week period. They're not going to argue with you over a few days here and there, but pretty soon we've got a spare supply - which can be immensely useful. I am afraid that I am useless when it comes to running out of stuff.
As for managing dosage, the only thing I can suggest is making a colour-coded chart; a weekly time-table like a school time-table with coloured dots at the various times you need to take the medicine, each colour representing a medication.
Thanks for your contribution to BADD Sally and thanks for being around on Monday to make so many lovely comments in various blogs - I am sure this helped tremendously. :-)
Hope things pick up for you soon.
Thank you Goldfish, ordering a 'bit' in advance each month is good advice which I have managed to follow with many of my drugs, its just the MTX they are over zealous with, as Danger of Death is a very present danger. They have rung me before to quiz me: do I really need more now ? The chart with coloured dots would be a good visual 'in my face' reminder, that I will seriously consider.
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