Feeling Better?

I haven’t posted much this month, partly because it’s December and I’ve been busy and partly because I am feeling better.  Yes, that’s right, I don’t want to jinx it by writing it down but I am feeling better.

The bone-crushing fatigue I’ve had for almost all of 2009 seems to have lifted, I’m no longer struggling to sit and stand by lunchtime. I can get my work done in the evening and manage housework at the weekend.

None of my joints are too bad either, my ankle still isn’t great and the snow and ice have made it clear how much range of motion I’ve lost in that joint since it started flaring up several months ago, but it’s not screaming agony to walk down the stairs and that has to be a good thing.

The other reason I think I’m feeling so well is I’ve just had an appointment with the rheumatologist, and I always seem to make a miraculous recovery about 2 days before I visit the doctors. Anyway, I trudged through the snow, for a 5 minute consultation that consisted of “yes, you seem to be doing better, come back in 6 months”.  6 months is an improvement on 3 months, lets hope none of my other joints flare up in the mean time.

I think that is the trouble with this disease, it’s so unpredictable. I am constantly waiting for another joint to flare up and give me trouble and based on past experience that will happen again.  I also know that the fatigue could flare up again any time and if anything, I find that thought more depressing.  Fatigue screws up your life, I don’t care what anyone says about pacing and finding your limits.  At the end of the day, if you can’t do what you want to do (and often HAVE) to do in a day then it’s frustrating and depressing however much you “pace” or “goal set”.  When that fatigue goes on for months it’s very hard to keep up any semblance of a normal life.

Anyway, enough moaning. Here’s hoping 2010 is a good one.

 

Why singing helps

I wondered if there were others in that cathedral with rheumatoid arthritis. If there were people there with cancer, with MS, recovering from surgery, grieving loss. How many of us were in pain? But our harmonies lifted above all of that; they rose, with the great ringing of the organ, into the rafters and into the night. Beyond all of us.

http://pensandneedlesblog.blogspot.com/2009/11/singing-beyond-our-bodies.html

I’ve sung in choirs for years, although I don’t have either the time/energy right now. When I sang I never really thought about others, I never thought if other people were in pain (or not). I know I feel less pain when I sing, probably because I’m concentrating on something else but concerts and rehearsals do involve a lot of standing (usually in cold, draughty buildings).

I love to sing because it is such a physical act; but I also love to sing because the music I produce is incorporeal. It thrusts out and away from these sore, stiff bones, this heart that doesn’t know quite what to do with itself.

Music heals. I guess.  If not physically then mentally, it gives you a break. Something else to concentrate on. Hopefully I’ll be able to do some singing this Christmas. Is singing worship? For me personally?  It depends.  Occasionally it is, usually it isn’t. It’s just something I enjoy doing.

 

Twelve Quakers and Faith

I am currently reading “Twelve Quakers and Faith”. I like it and want to read more in the series.

Apparently it is Pamphlet 8, makes it sound like some arcane government document from the 1950’s.  Pamphlet is good, pamphlet means short, it is only 36 pages long.  This means it was cheap (£2.50 plus £1 postatage from the Quaker bookshop) and it is easy to read if you have kids running around.

Having said it is short and easy to read is perhaps doing it a disservice. Many of the ideas take time to digest and I rather think the point is to read and consider each point of view rather than race to the end like an express train.

I read it in a oner and raced to the end like an express train. Oh well.

When reading about other peoples personal experiences, I find I am always comparing them to mine, do I agree with their views? Is their world viewpoint the same as mine?  Do they use language I like or does it turn me off? I’m not necessarily sure this is a good thing, but it is what I do.

Personally I find too much mention of God, Jesus and long quotes from the bible just don’t do it for me. I turn off. I feel like I am being preached at.

So as always I found myself comparing my views to those in the book and unusually, I found myself agreeing with  “1″.

“so much of my belief was cultural as much as theological; implicit in it was church architecture, music and literature.”

This is true for me, I was brought up in the Church of Scotland. I love church music, the architecture. When I first heard of Quakers, I dismissed them out of hand as there was “no music”.

I now realise that I can enjoy religious music in all it’s forms but this does not have to be an integral part of meeting for worship. Anyway the whole Quaker idea is that your whole life speaks, not just the bit you do in church, so I can still enjoy religious music.  All this is a wordy way of saying is that my early belief was as much cultural as it was religious.

It was a great relief to become a Quaker and not have to say things like “he descended into hell…”

I agree. How can you recite the Apostles Creed if you don’t believe in it? Surely that is the worst form of hypocrisy? I have never taken Communion as I do not believe I am eating the body of Christ. I also fail to see how doing so would make me a better person.

I was a regular attender at a meeting in England. One week, a lady explained how she had been at a Church of England church. They were having communion and she had not taken part. She had been encouraged to go forward to the altar for a blessing. Again she had refused. I felt such relief when I heard this.  Here was a woman who I admired and seemed to share my same uneasiness at taking part in communion. Maybe my views aren’t so heretical after all.

In meeting, not all vocal ministry is directed specifically at me. So when someone speaks and it doesn’t hold any meaning for me, I remember the relief I felt when, one sunday the ministry did speak to me and I hope that someone else in the meeting is gaining the same benefit from the ministry that had no meaning for me. For me, that is the essence of how a Quaker meeting works.

Anyway, I have enjoyed reading this booklet and I will probably consider some of the other views in more depth. After all, how else do you learn?

 

More books I’d like to read

Science not Art

http://www.gulbenkian.org.uk/publications/arts/science-not-art

signs and humors – The poetry of medicine

http://www.gulbenkian.org.uk/publications/arts/signs-and-humours

More of the twelve quakers series

http://www.quakerquest.org/index.php?option=com_content&task=view&id=19&Itemid=29

 

Poem …life could get this small…

This poem haunts me, maybe haunt is not the right word, one phrase in particular sticks in my mind;

I never thought that life could get this small

It is from a poem called “Chemotherapy” by Julia Darling. It ends saying

I’m not unhappy. I have learnt to drift

and sip. The smallest things are gifts.

You can read more about her work in this article in the Guardian.

http://www.guardian.co.uk/books/2004/aug/05/health.poetry

I like the description

My joints are like rusty cranes

My spine is frozen

 

 

Prayer…

This random person walking the other direction said to me ‘I’ll pray for the Lord to heal you!’

I said, “Well, He made my genetic disorder, so I think I’m stuck this way.”

http://www.rheumatoidarthritisguy.com/2009/05/on-becoming-visible/

LOL!  This was in the comments section and really made me laugh!  I think that’s why I like quakers, you can be a quaker without having to go round and “inflict” your faith on all and sundry. I’d be so insulted if someone called out to me in the street.  Evangelicalism is not for me.

 

Walking sticks, canes etc

So back to the present moment of today, I once again have to get used to the laser vision stares that come my way as I walk down the street. A seemingly healthy guy with a cane just seems to draw a lot of eyes. For some reason, strangers always feel the need to ask me what sport I was playing when I got my “injury”. Uh, I got into a cage match with my immune system, and my immune system seems to have won. I am tired of pretending to be a soccer player, but they always seem to like that response and leave happy. (I used to answer by saying that I had rheumatoid arthritis, but that never seemed to work — too many blank stares, and too many comments on my age.) I was once even asked if I had gotten hurt while mountain climbing. How adventurous of me, no?

RA Guy – On Becoming Visible

Okay, I know I have “disclosure issues”. i.e. I don’t like telling people I have arthritis because, quite frankly it’s none of their business.  I don’t want their sympathy and I don’t want their crappy fish oil/no tomato/no potato cures.

So I can really relate to this post “on becoming visible”, I have used a walking stick in the past, I have a couple. I started of with a nicely carved solid wood one. It really helped, I was in a lot less pain, for about a week. Trouble was, I was putting so much weight through the stick that my hand shoulder etc started to hurt and I quickly realised that I would rather have sore feet than a sore hand. What I couldn’t cope with were the “laser vision stares”. I would rather be in pain. Vain but true.

A few years on I got a different stick, more of a hiking pole, but with a nice comfy handle. It also had a bit of a spring in it so it was easeir on my hand/arm. It was still a stick.  Young people, who look fit and healthy with a cane attract stares.  Everyone is trying to work out “what is wrong with you”, if you look to be walking okay (maybe becuase you’ve just left the house but you know you’ve got an hours shopping to do). people assume you are “faking it” or “attention seeking”.

The other thing that nobody gets is that with arthritis you can be up and down faster than a bloody yo-yo.  I can need a stick one week and not the next.  This does no mean I am “getting better”. Using a stick does not mean I am “getting worse”.  No one understands flares until they live with them. For me, it’s easier to put up with the pain than face other peoples judgment. For now anyway, I don’t know what I’ll do when I can’t lean on the pushchair!!

 

 

Parenting and arthritis

This was in a post on the excellent RA guys website:

They don’t want their momma to feel pain and when I do, they feel insecure and uncertain about how to rescue me.

This was in the comments section, it made me think

It is going on two years for me with my journey with RA and Fibromyalgia. My older son is nine and a half and the baby turns a year old next month. The hardest part for me is dealing with the fact that the baby will never have the same mother that my nine year old had.

This also made me wonder whether I am strong enough to conquer anything and everything. Am I, as a parent, required to be unbreakable or always be confident about myself, about my parenting skills and about preparing my children for the world? I guess the answer to that is that we are all learning as we go.

http://www.rheumatoidarthritisguy.com/2009/08/parenting-ra/

I can understand that kids find uncertainty frightening so I can understand hiding your arthritis from them as much as possible.  I can also understand the need to be open and honest with your kids without scaring them. A difficult balancing act.

As this post points out, it’s not the pain itself that is frightening, it’s not knowing what to do that is scary. So if the pain is bad giving the kids a task like getting a wheat pack or a glass of water (something/anything) is better and less frightening for them, because then they have something useful to do.

How much do you want to let your kids know?  How much are your kids going to tell their friends/friends parents/teachers?  How much can you ask of your kids? How many chores are too many? (or not enough!).

 

Silver Ring Splints

http://www.silverringsplint.com/index.html

I hadn’t heard of these before. The joints on my 5th fingers are starting to “fall in”, I notice it most when I play the flute (I mean, apart from typing you don’t really use your pinkies that much…).  Perhaps something like that would stop them caving in, at least long enough to get through a piece?

http://www.rheumatoid.org.uk/article.php?article_id=81

http://www.sciencedaily.com/releases/2008/06/080603174302.htm

 

Academic giving to charity

http://news.bbc.co.uk/1/hi/uk/8360098.stm

Very generous! This university of Oxford scholar plans to give to charity anything he earns over £20,000. A very noble idea.

When I read it I just kept thinking, what happens when he has kids? Admittedly, he is a man, so he is unlikely to give up work to look after his children (I mean, I WISH I earned £20,000 a year!). But kids like things like horseriding lessons and music lessons and school trips. You can do all these things on £20, 000 but I’m not sure you can do that AND live in Oxford!!

Good luck to him though.