29 March 2010

back and forth?

I wonder. But no, something must be changing, I mean: something surely is changing, I am changing. Tiny baby steps, minute little shifts, something, for the love of whatever, change!

The last 10 or so days I felt I was getting worse. Was I? Am I? What is worse? Is worse just not getting better? Is worse my impatience, my panic, my fear, my too much listening to my symptoms? Or is it an actual physical sensation?
No, yes, it is the latter. The roaring, the pressure, the shivers, the aching ear, the hot red face... And UJ's mail about her experience with eerily similar symptoms. And other patients urging me in the past to carefully monitor my symptoms and to voice my concerns to the professionals at all times.
So today I faced my concerned and confused GP and phoned Dr. B who swiftly reset my drugs to a higher dose, just like that over the phone as in "let's try this out". And whoosh I am back to a higher dose with instructions on a much slower reduction procedure.

Last week I went to the shrink. Middle aged woman, a bit plump, nothing as grand or posh as Mrs S and no dramatic interior design scheme, no echo, no stukko ceiling, no big mirror. I felt pity, confused pity coming from her towards me. I hope I was wrong. She said very little, asked in the end whether I think I want to come again. Felt a bit as if she was hoping I would say no. But I must give her a try.

I want to rediscover my dignity. My graceful soul, my love of life, of living. I want to get through my day without fear again. I want to face the challenge. How?

19 March 2010


Down across the bottom of the garden I can watch a neighbour's forthysia about to blossom. The snowdrops are yesterday's news and so are the crocus. Today's star is the purple pulsatilla. The birds are very busy and my two elderly cats watch their hectic activity with envy. There are tiny dark leaves sprouting low on the valerian plant which must send out a strong message as cats in all shapes and colours come and rub their noses in it.

Last night was rotten. A heavy hand has been pressing onto my chest. Many times I woke with my mouth wide open and dry as a brick, gasping for air. There was no real sleep. Fear of suffocating.
Today is bitter. The roaring in my head howls out, the vice has been turned even tighter and my heart struggles along irregularly. My head is so very heavy and my teeth are chattering. I am nauseous. My hope is for a deep sleep tonight but I fear I'll jinx it if I write this.

This morning instead of breakfast I took down names and phone numbers of female psychosomatic experts within reasonable distance and phoned about 10, one after the other, looking for an appointment. This was urged by lovely Dr F yesterday. I left my name and number on numerous answerphones, got a couple of sorry-we're-full messages back and two appointments for next week of which I have to cancel one. And I have to postpone the ENR appointment again. I hate having to make these calls.

It's hard enough trying to get there.

It would be so great if someone could help me organise all this. It is such hard work.
Then again I try hard to convince myself: You are not as helpless as you think. You are stronger than you think you are. But it's hard. I want to fall back into a deep sleep for a long long time, switch off my mind and only take in glimpses, short presences, no more thinking please ever.

18 March 2010

different normal

Some mornings, sometimes during the day, there is this fleeting sense that I will come out on the other side of this. Today was not such a morning but I think I worked my way steadily and bravely through this heavy black blanket all around me.
Got a message from B - a virtual companion in this illness - who assured me that I will eventually return to a normal life again even if it will be a diferent "normal" than what I have known so far.
It was meant to be kind and reassuring, I know, but I flinched. Oh, how I hate what this is reducing me to.
Tonight the drama is in my head, roaring and banging and pressing the vice harder and tighter.

17 March 2010

The thing is I am really alone

And there is nothing that will change this. At times my tiny social net appears almost non-existent. I am reaching out and in return hear a loud echo most of the time. And then I don't reach out any longer. I cannot bear explaining this monstrous illness yet again, while anticipating someone's withdrawal. The clueless shaking of heads, the embarassed giggle and "all will be well" drivel. And the long silence. I have started reading "In your face" by Lia Mills which is very moving and recognisable to some extent but her dscription of friends and their support makes me weep. I don't have it. I am alone. People are as clueless as most of the doctors, curious once, and then drift away and I cannot bring myself to ask again. My companions are virtual. The loneliness roars inside me.

15 March 2010

The dark grey winter

I am so tired of whining and feeling sorry for myself. I am so tired of this dark, grey winter drama, outside and inside of me. The weekend was hard with all this fear about what's going on with my heart. Watching and listening to my body is doing me harm. And now, mid afternoon, is often the hardest time of the day when I get all jiggery and I imagine it's because of the cortison getting low. But of course I don't know that. I just remember Dr.V-H in the clinic in M advising me to use the mornings for important things as I will be at my best then. "My best". Hah.
Mid afternoon is the time when the roaring gets so loud it scares me. I feel it wants to remind me of being ill. But also I notice clearly that the roaring gets louder and the pressure in my ears increases when I move, when there are sudden outside noises and after I have eaten.
GP K was his usual understanding pleasant self again and I felt such relief. Maybe because of what I said the last time about whether he wants to keep me as a patient. Anyway, he is looking into things cardiologically and we will meet again tomorrow. I also expressed my fear that I was heading into a psychosomatic tunnel and I told him that I want professional help if that's what is happening to me. And not the kind of "listen to this CD"-help Mrs S is offering in her beautifully furnished rooms and her expensive clothes and shoes. I don't think I want to go back to her. I feel as if I have looked under her covers.

Re psychosomatic: "...it's good to mull these things over [...] to lift the slimiest of rocks and see what's underneath." (Lia Mills, In your face)
Phoned Dr B this morning with the hospital results. She is so pragmatic and cheerful and even though K doesn't accept her suggestion (until double checked with an expert) to have yet another cardiologic test done, I value her time and her matter of fact professional assessment. Every time I speak to her my symptoms seem to fall into place ready to be looked after and sorted by the proper medication, time and patience, relaxation and recovery.
If only. There seems to be so much more involved that I have yet to grasp. Being alone so much of the time is the hardest but being in R's company was not much better the last two days.

The days are longer now, the promise of spring is there even with the rain and the grey skies. Sunny this morning in between. The heart has been calmer today so far. Still noisy when I breathe, also shaky and my steps echo inside my head. Tired. My big cat is getting so weak I think she is dying. We rest together on the sofa after she struggled onto my lap forwhat feels like ages of pulling herself up.

11 March 2010

A week in hospital

There are moments of simple clarity where my mantra works a dream and I look out into a world almost at peace. Where – albeit vaguely – I can see myself living confidently through the coming weeks and months slowly but surely recovering. Where I can see myself learning to cope with my new life even if recovery does not materialise as straightforwardly as I want. Where I can see myself discovering new strength in coping with a changed life scenario, with chronic illness, disability and loss, loss of income, activity, energy and mobility.

But then again comes the dark hour or hours, the black dog, the old crone, the witch, the heavy cloud, the curtain of despair…folding, washing over me, cornering me, crushing me until I feel that all of that little bit of spirit and resolve has gone out of me.

Most of last night my heart was racing and rattling again. But my heart has been checked from almost every angle and appears healthy. One more test tomorrow. Yesterday’s gastroscopy confirmed the suspected gastritis, hardly avoidable with the drugs. There must be a way to get at least that under control.

One thing this hospital stay has taught me: There are people who are struggling and coping with so much more. So maybe one day I will learn this also.

06 March 2010

today's mantra

According to Wikipedia: A mantra is a sound, syllable, word, or group of words that are considered capable of "creating transformation".

Here we go:
What I am experiencing is a heavy flare of a rare and serious autoimmune disease. This flare will pass in time. The medication will work despite its side effects. My hearing is back to normal. The present problems with my heart, breathing and digestion may not be related and even if they are they may be treated in due course. That is why I am going back to the hospital tomorrow.

This I want to promise myself:

I will not die of this.
I will not lose my hearing.
I will get better again.

This much I know for sure:
I know of people who have recovered from such a flare.
The drugs I am taking have been successful with other sufferers from this disease.
I can hear again.

05 March 2010

sneaking home from hospital

In the end GP felt it necessary to have my irregular ECG readings double checked and since I have been very shaky with palpitations and shortness of breath this last week, he arranged for me to go this morning to the MH. Everybody was nice but it was such a wasted day and the prospect of waiting in this room with two very ill women there until Monday was too much. At dinner time (which comes early in hospital) I signed myself out to return on Sun evening as the actual tests are not due until Mon. Of course I am nervous but the ward doctor was very unconcerned and said there was nothing alarming in the bits they did today (ECG and blood tests) and the three careful student interns who examined me heard a strong and regular heartbeat.

This last week I have been so weak and shaky and what with the palpitations, the waking up at night gasping for air, the fact that there is almost no roaring and no symptoms after a good night's rest - i.e. moving makes it all worse - I am even more insecure and this I-am-like-a-raw-egg feeling is so persistent.
Yet: for the past couple of days I do feel some slight, ever so slight improvement after the eve dose of Aza. Or maybe it's my man being at home and around me. Whatever. I accept it as a gift for the time being.

Tried to concentrate on breathing whenever I felt uptight and panicky today. Tried not to do or say anything, just using breathing to calm myself. Attempted it at least.

My lower legs are numb a lot.

02 March 2010


Last nightI wrote to UJ about the clinic and my exhaustion and I asked her whether there was a good fairy for autoimmune patients. She directly replied, "I can assure you that this acute flare will one day be over even if it's an almost 'impossible promise'".
My heart made a leap. And all day today this simmering feeling inside of me: One day you will feel alive again, you will feel joy again, excitement, happiness... so much to rediscover behind this heavy black curtain around me. Switch on the radio and hear a song and start dancing. One day.

01 March 2010

and on and on

Well, the roaring has come back and the vertigo has more or less disappeared. Some deal. And, they wanted me out of that clinic fast. Once the print outs from the diagnosis showed acute vertigo, it was only a small choice between what university clinic I was sent to. By the time I arrived at the one closest to home, vertigo had calmed down and they sent me home. And so here I am.
The last four weeks at the specialist clinic were useful but also much too stressful. Too active, not enough rest. Autoimmune vasculitis is a battle, immunsupression and the side effects from the drugs is a tough job for the system. At least I know that now.
So I am back at home, alone with the cats, books, internet and my panic stations. But also with my coping strategies and in the evening, my man comes home to me. Spent most of the day flat out or in front of laptop.
GP K was brisk, almost pushed me out of his office, was somewhat offended when I asked whether he was prepared to keep me as his patient. Maybe I imagine things but he seems to disagree with the treatment? I have no choice and he can stuff it. I need him to do the labs, to get me the medication and the sick certs.
Tried to get an appointment with a local immunologist. Not until end of May...
Well, I am not an emergency. I suffer, yes, but I get the state of the art drugs and that is all modern medicine has to offer here. There is no quick fix, no relief. A long hard slow battle with heavy symptoms, with my panic and fears, my long nights and long days of exhaustion and maybe one day the promised improvement? I cannot afford not to believe it. Medical experts tell me, told me, that my chances of recovery, of remission are good. Some even said: you will recover. I try to carefully reach out to some fellow sufferers but the minefield of negative and upsetting internet sharing is too much to cope. I must be my own island, must relearn to find sanctuary in my own strength.
Symptoms of the day: heart racing, pressure in chest, somewhat better after evening meal, pressure headache in the evening, bell jar feeling, little vertigo, roaring slight am worsening pm. EXHAUSTED.