Cooking, that was my afternoon yesterday. I spent a whole four hours making Psyllium pancakes. Well, to be fair it did spend two hours doing nothing other than sitting quietly growing and growing. I just wish the yeast did something other than just make it easier to cook, looking at the finished article and they are as flat as a pancake ever was, no depth or lightness at all. On the upside the pain if I stick to my normal diet and don’t eat too much, has been dramatically changed, not gone, just changed. I still get pain daily, it has never gone away, but it is mainly at a reduced level. I can only guess at this, but I think the slimy film it supplies, make things move more easily, so the dead nerves that are all over the place, are no longer totally preventing the contents from moving as they did before. The few good nerves that are still working can actually do the job they should, they just needed this small amount of help. It is though still the pain second highest on my wish list of pains I want rid of. I have been for the last three weeks eating just one pancake per day without having to try and disguise it with something else, since I started not adding flour to the mix. I don’t understand how that changed the taste, but suddenly Psyllium has become edible. As I said yesterday, life really isn’t allowed to be easy and there is a price to pay for everything.Those four hours snatched from my day, even though I spent one hour asleep as it slowly rose and the rest was spent sitting on my perching stool, had left me totally shattered. Even this morning, I am still feeling the effects as my body is aching from the unavoidable exercise that it just isn’t used to. It also shows up another one of those things no one tells you when you are diagnosed with a chronic illness, all solutions to your health don’t come in convenient tablet form.
I don’ know why, but once I really knew what was wrong with me and what it was going to do, I had this image of an eventual future of living off medication. I saw my future spent sat next to a growing table full of tablet containers. That my life was simply going to end with me connected to a dip that fed my cocktail of drugs into me as I couldn’t swallow them, but everything I saw was drugs and more drugs. I suppose part of that comes down to that myth that doctors can cure everything, and what they can’t they can treat. Being a post world war two baby, also meant that I grow up in an age where it didn’t seem possible that this brave new world of technology and high tech medicines could possibly be turning itself backwards to the world of herbal and potions. I somehow totally missed the beginning of the journey backwards and when I was aware of it, I didn’t believe in it at all. Science was always going to have a better answer than anything that grew in a field. This thing called Psyllium was even when the consultant spoke about in glowing colours and was promising me was the cure, sounded like hocus pocus. I am going to be honest here, and say that if anyone other than that consultant had told me about this stuff, I wouldn’t have believed them. Yet, there was a surgeon telling me to eat some herbal gunk and to throw out all the meds my doctor had given me to help my bowels work. If I hadn’t believed him, I wouldn’t have spent three months experimenting on finding a way of making the 200% totally inedible, edible.
So OK I don’t go to the loo every day, but I am going to the loo, which is a huge relief and result. I used to go once a fortnight and went through more pain that I thought possible. Now it is once a week and occasionally a couple of times in the same week. I still go through huge amounts of pain two or three days a week, especially in the hours leading up to my making a visit to the loo. Worse still to that is it quite often wrecks the last 4 hours of sleep, leaving me awake in bed, unable to sleep and not at the point where I can go to the loo. To many, that just wouldn’t be acceptable, but when you know that life without Psyllium found me spending hours in pain so bad that I broke into sweats and had my finger hovering over the nine button on my phone at least twice a week. This is an amazing turnaround. Going forward, if a consultant tells me to try any herbal solution, I will and I will do it with far more hope and belief than I did when I first realised that this man of science was seriously telling me the answer was in a plant.
The consultant apologized that he didn’t have the answer to the pain, he didn’t lie to me, he said that was for me to find the solution. He made suggestions, from things his patients had said worked for them, but he couldn’t truly give me any hope. Oddly, when you live with pain, you sort of learning to accept that pain is part of your life and there is no answer. Morphine has been a total godsend to me, but no matter how bad the pain, that breaks through my daily doses, I still have a reluctance to taking more. Especially for pain from my stomach. As yet, I haven’t learned to tell the difference between sudden painful short bouts and their big brothers who last hour after hour. I find myself sitting here all to often, saying over and over to myself, it will pass soon, just wait a little longer. Mind you I do that where ever the pain is coming from, another ten minutes and it will be over, just wait. The ones that usually works the best, are the ones that are muttered over and over until I go to sleep. I don’t know how I would cope without that escape into sleep, I know I am so lucky that my body has at least taken this root out of life. Without it, I doubt that I would still be here and if I were, I would have lost every strain of sanity that exists.
So now I am on the countdown to seeing my next consultant, this one for my COPD and all it is managing to do to me. Adam and sat the other evening and were talking about something that brought up the topic of my exacerbation that triggered this appointment. For the first time in a long time, I heard and saw anger in Adam over my treatment. Clearly what happened back in June has been playing on his mind. He came out suddenly with a declaration that if I was ever that ill again, he wasn’t going to give a damn what the doctor said, if he didn’t come out to actually see me, something that didn’t happen once, he will be calling an ambulance. Even when I was ill, I wasn’t happy about not being seen, as I like Adam was sure that I needed oxygen, not just antibiotics and steroids both prescribed separately and both over the phone. I had had pneumonia before and I wasn’t as ill then as I was this time, then I was rushed into hospital and spent three days with a drip for the drugs and an oxygen mask permanently attached.
I really don’t seem to be able to win recently with the combination of my illnesses. I have noticed a pattern with the pain in my chest that makes me without even knowing I am doing it go into shallow breathings. If my stomach is painful, it clearly kicks off pain in my chest, but if I am run down with my MS, as in fatigued, it also seems to make breathing more difficult and I slowly slip into shallow breaths. During the day, I catch it, I have learned that I can actually make the upper part of my chest expand a little further without causing more pain in my diaphragm, but at night, I have no control. Adam is now picking up when I have woken with that headache and buzzing in my head, but he is now also picking up on the more subtle effects. More and more he is that bit reluctant to leave me and is home at lunchtime to be sure I am OK. Yesterday was a good example of both and one of a handful of recent occasions that he has admitted that he wasn’t happy with my appearance in the morning. At least we have less than two weeks to wait for the answers as to what the consultant will think and do. I don’t know why, but I half expect it will just be in this case, more drugs.
Please read my blog from 2 years ago – 01/09/2013 – The right thing
As yesterday passed I didn’t just get tireder, I started to totally crash. I had had a nap in the morning, something I don’t normally do, but I still equally need to sleep in the afternoon and I did, for 3hrs once more. I have to say that I did wake up feeling a lot more refreshed than……
I wouldn’t begin to compare my LCSSc daily pain to yours but my, do I feel empathy. I do hope the next consultant has some good suggestions. Take care.
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GOD, I WISH I HAD SOMEONE LIKE ADAM.SOMEONE, WHO AT LEAST GAVE A DAMN .I’VE HAD A HORRIBLE DAY, YET, NO PHONE CALLS AND WHEN I CALL, NOBODY PICKS UP. IT’S BEEN A YEAR SINCE I’VE EVEN SEEN A DOCTOR. YET THE HEALTHY ONE IN MY HOME HAS AN APPOINTMENT ONCE A MONTH.JUST TO POUR SALT ON THE WOUND; MY DAUGHTER IS ABOUT TO START CHEMOTHERAPY. SORRY, I’M WHINING AGAIN. IT COULD AND WILL BE WORSE.