Thank you to those of you who have commented on my last blog, ‘the quandary’. In response I will give an overview of where things are now and then hopefully just quick mentions as and when necessary.
Since January I have been coping with increasing lack of energy, frailty, lack of balance, joint pains, much greater sensitivity to certain chemicals resulting in several episodes of anaphylactic shock, and recently, falling over for no apparent reason. And no, it is not the drink. With the result that I had to stop many of my favourite activities, no walks in the country, no playing my flute, no exercise or fresh air, leading to weight gain, depression – and I must admit – comfort eating.
It was suggested that I take anti-depressants and just live with the other symptoms. When I said that if that was all that was on offer my life had come to an end because I could do none of the things that made my life worth living, I was asked whether that meant I was going to do ‘something silly’. No — it meant I was desperate for some help, and, unusually for me, was asking for it.
Well, I left the surgery and decided it was time for some self help. I put myself back on HRT and within two weeks the joint pains had gone. I heard of an Allergy Specialist Clinic near London and wished to attend since our local hospital up here did not know what to suggest next. However this is a private, albeit a charitable, institution and is not readily available on the NHS. Their estimate was a shock!
And this is where I get teary-eyed. A long standing and good friend from the US asked if I would allow her to pay for my treatment at the clinic and then for a plane fare over to California for the worst of the UK winter to stay with her and her husband. Then my best friend from Ireland said that if I still needed extra funds she would help if she could. And then a blog friend, again in the US, who has never met me, offered to put me up and help me with transport to the Mayo Clinic if I decided to come over to the USA after getting no proper diagnosis in the UK. I don’t have the words to adequately express my feelings about such thoughtfulness, kindness and generosity. I have tried to thank those involved, but anything I say does not do justice to my feelings.
So I have begun attending this clinic. They have taken pints of blood (for which I have not even received a cup of tea or a biscuit!) and several of the tests have taken place in Germany and the USA as well as the UK: the results are in. Mitochondrial clumping and lack of essential nutrients in the mitochondria: raised blood pressure: struggling kidneys. Genetic tests are under way as we speak.
Twelve days of allergy testing have been recommended and I went down for the first lot last week. On the second test I collapsed, stopped breathing and, apparently, went blue. I would not mind if I went unconscious, but the whole time I lie there, unable to move or speak, but thinking “I am sure my chest should be moving, when are they going to give me some adrenaline, anti-histamine and/or oxygen?” It seemed like an age!! That left my poor old body somewhat shocked so after a couple of hours recovery I was sent home, with no more testing to take place until I recovered. Four more weeks of several days at a time are now booked in. Fun, fun, fun.
Alongside these allergies and sensitivities, both the London Clinic and my GP suspect Multiple Sclerosis and I have been referred to a Neurologist for more tests, this time up here in Sheffield. To say I am not happy with this possible diagnosis would be an understatement. There is still too much I want to do in life and for which I need to be reasonably active and fit. And I do not much fancy a trip to Switzerland in the latter stages for the final ‘drink of death’ and a square of chocolate.
I, and both my parents before me, have suffered from various auto-immune system diseases for many years. And of course MS is yet another. However, I am not at all sure that I agree with the medics. in this instance.
I must accept the lack of reflexes in one leg and have no explanations at all for that. Neither do I have any real explanation for the atrophied calf muscles, except that the worst are on the side where my stomach has had many operations in the past and where the leg muscles are already weak.
But I am convinced that the lack of balance and falling over have something to do with the violent migraines I have suffered for 12 years and/or the strong meds. I have to take to relieve the pain. At least the brain scans etc. might shed some light on my suspicions in that quarter.
Allergies and sensitivities affect the mitochondria by allowing calcium to flood into the cells, so that might explain their malfunctioning, and therefore the problems with energy levels.
In short, my gut feeling, is that several low-grade but long-term chronic conditions have suddenly coalesced, perhaps ‘egged-on’ by the cessation of the HRT last summer, giving rise to this plethora of odd symptoms. After all, the central nervous system is going to exhibit similar symptoms whatever the cause. At least this is my version of events to which I shall cling in the face of any number of gloomy prognostications from well-meaning medics. until I have substantive proof to the contrary.
But despite my firm self-belief I was thoroughly shaken this week when I received a letter from the London Clinic: it was a copy of a letter the Consultant has written to my GP, and they were very properly keeping me informed. However, the letter referred to nothing except Multiple Sclerosis, and one page listed the various stages and symptoms, ending with death. I had not been expecting this letter, and was thrown for a while by the brusqueness of the tone. Only to be expected of course, as it was from one professional to another. But it would have shown more ‘beside manner’ if it had had an accompanying letter to prepare me for the contents.
As you can imagine, this year has seen me go through the gamut of emotions from despair to anger, and quite a lot of fear.
Now, however, I feel more resolution than anything else. I am firm in my own diagnosis, feel I know my own body best, and also am more in touch with what has happened over the yeas, which has been complicated and is difficult for a medic. to keep up with all at once. So now I am on a new regime of graduated exercise since the HRT is properly working, with a severely healthy diet to support the poor old mitochondria, plus stiffening my resolve to undergo the frightening allergy testing to try to sort them out, and consequently to give my whole immune system less load to cope with.
And to make the absolute most of each day.
I have a music exam in just over three weeks so have put off further tests until after that so I can concentrate on revision.
Last night I was moving an electric fence with the two little girls who have begun coming to our house to look after the ponies (since they are mad on horses and have none of their own) when we found a whole patch of mushrooms. They had not picked wild mushrooms before, so I showed them how and we all took piles home to cook with oil and garlic. It was exhausting and I suffered for it later, but it was such fun to be out with the young and fit! They are so sweet. And enthusiastic. And so much is still new to them.
Then today was one of those unusual gifts of a day, when the sun blazed in a blue sky, the insects hummed, and I went up into the Hay Field with a dog to pick sloes. No wind, just burning warmth with the scents of an English Autumn wafting, and the burnished colours of the changing leaves all around. If I succumb to anaphylaxis at least I have had today: the blackthorn echoed the colour-scheme of the day – I was immersed in yellow leaves with deep blue sloes studding the dark branches, each berry with a silver bloom, looking like swags of jewelled necklaces threaded along dark strings. The dog was so hot it lay down and panted and I wanted to follow suit. We planted these trees after my mother died (she was a great countrywoman) and this is the first year they have fruited. I tried to breathe the day in, and burn it into my memory.
While I was picking, I was thinking of the antiquity of blackthorn, and the hundreds of years during which people have picked them in the English countryside, exactly as I was doing today. And I was using the Swedish fruit can from my mother’s side of the family.
I would have taken photographs for the blog but my camera has failed and I must take it to be mended.
Exhaustion set in after that outing, but it was worth it. The sloes are gently stewing in the bottom of the cooker while I make up my mind what to do with them. “Sloe gin”, I hear you call, and of course that is the ideal. Except that I no longer drink. So I am thinking of recipes where you add ground almonds to the stewed fruit, and perhaps some cornflour, to take the worst of the acidity off, and make some kind of thick fruit stew to have warm with thick, cold creamy yoghourt.
No point repining: any of us could be run over by a bus tomorrow, so why should I feel any different. Just concentrate on the day and extract all the goodness you can.
Sweffling….you amaze and impress me so with your descriptions of your struggles and the beauty of the countryside. I will be thinking of you every day.
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That means a lot, thank you so much:)
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Sweffling, I am sorry to learn of these difficult and confusing medical exams and diagnoses, but I am glad to hear how well you are coping. Please do write more as the feeling moves you. I will be keeping you inn my thoughts.
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I really appreciate your interest and support. Thank you so much:)
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the blog leaves me with many emotions but one is to say what a superb, courageous piece of writing. not to mention inspirational. it is quite a surprise what extreme situations/medical challenges bring out of us. i turned the experience of chemotherapy into a fairy story.
live for the day and keep in touch
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I cannot imagine turning the experience of chemotherapy into a fairy story. I would love to read it some time if you do not mind:)
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I’m shocked with the NHS utterly utterly disgusted. What amazing friends you have! Good luck with your exam and for the future blood tests etc – wow I really feel for you going into anaphylactic shock so many times, it takes me days to recover. I hope things start to improve soon. xXx
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Some surgeries manage to afford this clinic for their patients but they are all getting more and more squeezed nowadays. I do not blame them, but it is so unfair that money really can buy you health. I feel so bad for others who are not as blessed as I am with kind friends who are in a position to help.
Thank you so much for your good wishes: nice to hear from someone else who knows what anaphylactic shock feels like, it is so frightening, and yes it takes me about four days at least to really recover. The music exam is really a godsend because although I could do without the pressure, the actual working out of harmony and transposition is such fun, geek that I am, and takes all my concentration.
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I am so sorry my friend. Like was said in another comment, your strength and courage is a great inspiration to me personally. How you can describe all the horrific health issues you are facing and then take time to notice the beauty of life around you…is truly inspiring. Many people would not be able to bear the weight of all that medical news, as I am sure you feel that you cannot bear it, but your ability to still be able to see and experience some of the positives in life show just how strong you are. If there is any lady on the planet that will be able to fight her way through all of this and still manage to live a full and amazing life…..it will be you! Okease keep us up to date on what the Docs are doing and how you are feeling. Now…go back outside and soak up some more of that beautiful countryside….. just take a heavy coat…. you don’t need pneumonia on top of everything else….. 🙂
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What incredibly supportive and kind words, thank you:) Its this feeling of being joined to the natural world and the drive to experience life to the last dregs, which keeps me going. Sometimes I wonder whether it would be better not to feel like this, because it makes it so hard to even think of letting go: I am so driven to keep on loving life!!!!! Means there is no option but to fight on.
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“No point repining: any of us could be run over by a bus tomorrow, so why should I feel any different. Just concentrate on the day and extract all the goodness you can.”
I love this! And I love how you are able to take the ordinary and see the extraordinary in it and share that with us! Thinking of you!
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Thank you so much for your support and kind words. Gratefully appreciated!!
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You are amazing. It’s the tone here that makes me feel kicked in the gut (and, strangely, I mean that in a good way: I wouldn’t want to leave a post with such content feeling any differently); you are matter of fact but perfectly devastated…all “chin up” and yet not denying the anguish of all that’s going on. You take my breath away, which only seems fair, considering the the way you’ve had to fight for breath.
And then you go and write one of the most affecting blog lines I’ve read: ” If I succumb to anaphylaxis at least I have had today: the blackthorn echoed the colour-scheme of the day…” I’m left whistling the sentiment of “holy hell, woman” at you, with the deepest of respect.
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Thank you for understanding me so well. You have described exactly how I am feeling. And strangely enough, it helps tremendously that someone can echo back to me my feelings. I did not realise that. It makes me feel understood and supported in a very special way, thanks so much:))
I have a great respect for the stiff upper lip: in many circumstances it braces the spine and helps one think one’s way logically through things, even when one would rather collapse in a welter of tears. There’s a time time and place, and for me, the tears must mostly wait for when I think the battle is over:at the moment I need all my strength to fight. Of course I have had my moments, but generally the more desperate I get, the more determined I get:)
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Reading this has made me realise how long it is since I last looked into here to read your blog. I’m so sorry. You really are such an inspiration. I wish I could say more but I can’t because there are no words coming.
Lots of love
J xxx
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Thanks for popping by. The inspiration goes both ways you know. Your sensible eating and weight watching have spurred me on to look at my own!!
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