Why I value speaking/shutting up

I ranted on it, so I thought I should be reasonable about it too: (not) shutting up.

I value shutting up. I also value speaking up. It sounds an odd pair to value, but then some people might venture to describe me as odd anyway. Regardless, I hold onto this as a wise saying:

“There is an occasion for everything,
and a time for every activity under heaven:
…a time to be silent and a time to speak” Ecclesiastes 3:1, 7

There are times when it is really important to not speak: The words which bubble up inside will do nothing but ill. The thoughts in your head are too whirling and disjointed to help. The things that come to mind are meaningless. There are times when, regardless of how good and true what you have to say is, the other person is not ready to hear it. The things you say will fall on deaf ears, and all that will happen is your pearls will get trampled in the mud. There are times too when there is nothing better than to listen. Your side, my side, it is valuable and important but right now, the absence of opinion speaks louder than the flurry. Sometimes it is better to say “I am listening”, when you want to say “I disagree”.

There are so many times where it is better to hold your peace.

There are times when it is really important to speak: The fear and worry that tells you to keep your peace is holding back words which will break down barriers and bring healing. The thoughts in your head are exactly what they need to hear. The things coming to mind are timely and Godly. There are times when, regardless of how difficult the circumstances, the other person needs to hear what you have to say – even if what you say falls on deaf ears. There are times too when to not speak up is as good as saying you’re on the side of the oppressor. There are times when you are unable to do anything, and nothing you say is listened to, but you have to say it because if you keep silent you’ll be as bad as them. There are even times when words have power and effect great and mighty change, and you never expected it.

There are so many times when it is wrong to hold your peace.

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Comfort

I find a lot of the time, especially when I was really ill but even now, that people felt guilty telling me of hardships. Small things especially, like suffering with a cold or a bad nights sleep, but often they aren’t mentioned at all or if they are, it is with a “oh, but it’s nothing compared to what you have been through, I shouldn’t even mention it”.

Actually, I probably do the same myself. There is the tendency to think that because someone suffers greatly, they will be insulted if we seek comfort in our smaller sufferings. Sometimes they are. Or, to think that they would consider the small suffering to not be suffering at all, because the gap between them is so huge.

The way I see it is this though: any suffering or hardship, is suffering or hardship. It is beyond the point of not-suffering, and so unpleasant, no matter the comparison to anything else. If comparison was the only legitimiser to needing comfort, I doubt anybody would be worthy of it, because there always seems someone who is worse off in some way.

I found that, on the contrary to what people thought, I wanted to comfort people more when I was suffering, because I appreciated the comfort so much myself. Comforting someone is in itself a thing that makes you feel good, even the comforter. It brings people together, and part of me chaffed at being denied that when people would not share any hardships with me because of my own situation. I felt most of all, that I was more able to sympathise or empathise, more able to offer the silent comfort of listening, because I understood so much of what suffering was. Especially in things that seem shadows of what I went through – tiredness, pain, injustice, and whatever else – I know how awful they can be to go through, in a way those without encountering suffering could.

I think Biblically that this is the way to go, too. I came across this yesterday, from 2 Corinthians 1:
Praise the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort. He comforts us in all our affliction, so that we may be able to comfort those who are in any kind of affliction, through the comfort we ourselves receive from God.  For as the sufferings of Christ overflow to us, so through Christ our comfort also overflows.  If we are afflicted, it is for your comfort and salvation. If we are comforted, it is for your comfort, which is experienced in your endurance of the same sufferings that we suffer.  And our hope for you is firm, because we know that as you share in the sufferings, so you will share in the comfort.”

It reminded me of my thoughts on this matter; that actually it is through suffering ourselves that we are able to really come alongside others in suffering, and that it makes you want to do just that. I don’t deny that there are people who really do get upset by others mentioning their own sufferings, indeed that there are times in which it isn’t a great idea to bring up minor things in the face of major, but I think that this is the right response to suffering – to reach out and comfort others. Not always easy, or painless, but right.

A first anniversary

So, today is the celebration of one year of being severely ill and disabled – of course, I mean “celebrate” in the sense of solemn remembrance, not the party-style “hurrah!” kind of celebration. On this day one year ago, I woke up and couldn’t walk, and the receptionist at my doctors told me they only did home visits “in emergencies” so I should wait until I got better to come in.

Still waiting.

Still think that suddenly not being able to walk counts as an emergency.

It has been a year of discovery, despair, and a whole lot of change in one go. I certainly had never imagined or understood quite the extent of what it was to be this ill, and completely misunderstood the levels of support out there. I had thought that if you became ill, there was a safety-net of doctors, disability aids, care, community and income support waiting to catch you. Alas, like the rest of the disabled in the UK, I am still falling.

But, I want to take time to be thankful that I’m still here, and to reflect that it isn’t all awful. I don’t want to lose years to some terrible disease; I want to be filled up with years of joy and new experiences. This year has been hard, and horrible, but not only hard and horrible; it has been filled with good things too:

  • I grew closer to my husband, and we celebrated our second anniversary
  • I got a kitten of my own, and got to watch him grow up into the lovable menace that he is
  • I visited Spain (twice!)
  • I ate all my advent calendar early (which I have never done before)
  • I learned a lot, about ME, CFS, benefits, politics, and the reality of how the world is
  • I moved to a beautiful new flat
  • I learned to knit and crochet
  • I joined Twitter and Pinterest
  • I have made some really good friends: Helen, Abigail, Jenny
  • I became a lot closer to some of my existing friends as well
  • I met lots of new, encouraging people: Jen, Anna, Katy, David to name but a few, and of course all the Foggies (which brings me onto:)
  • I got to be part of a great community of all sorts of friendly people
  • I took part in a Secret Santa
  • I watched an awful lot of TV (again, something I had not done much of before)
  • I got to go on a robot-stair-climber, a strap-your-wheelchair-in taxi, a lifting-truck-thingy and four aeroplanes
  • I got to see pictures of my brain
  • I got to take part in online lessons for subjects I have been interested in but never had time for before
  • I took part in National Health Blog Post Month
  • I managed to keep a blog going
  • I got to campaign for a lot of important things
  • I got to see God’s provision first-hand
  • I found a whole new set of people I really admire, for their tireless activism and information gathering, in particular Tom Kindlon, Sonia Poulton, Sue Marsh, Kaliya Franklin, and probably lots more
  • I got to spend Christmas with my husband’s family for the first time
  • I found a lot of interesting and relevant blogs to read, more than I can even keep up with
  • I drank a lot of tea
  • I memorised way more Bible verses than I have done in my life
  • I learned a lot about myself, and grew in a lot of ways

I’m sure there are a lot more great things that I did this year, but those are just some of the ones I feel happy about and can recall at the moment! I often feel like being ill has stolen my life away, and that every day I lie here is a day that I’ve lost, but this is a great reminder that I am still alive and still living – maybe not to the extent I wanted, but certainly nothing to be dismissive of!

Recap (NHBPM 30)

So, it’s the end of NHBPM, which is frankly a huge relief. I enjoyed the challenge of having to write so many posts, and some of the prompts were very good, but it was hard going. I had to give up a lot of stuff, primarily time which I would have spent on social activity but also a few more “challenging” mental things like the amount of TV I watched, in order to manage the posts I did manage, and I still had to shift a couple of times. Writing posts ahead is quite good but apparently still fries my brain; every-other-day worked a little better, but still probably a bit much. As I think I said, I want to raise awareness of how ME affects you, and this is how: not enough energy for crazy schemes like this!

nhbpm_daycount-30

I enjoyed it though, and it gave me an opportunity to practice writing and learn a bit more about my limitations.

What else has been going on this month? Well, I had my follow-up appointment with the neurologist, which went well. She clearly knows her stuff, and I am very happy that she is not content to just dismiss everything as “chronic fatigue”- she really wants to find out what’s wrong, and then try to fix it. I have seen a lot of the bad side of the medical professions, so it’s both refreshing and a good reminder that there really are doctors out there who are in it to help us. It’s still hard to shake the constant fear that she will turn around and go “a-HA! It was all a trick! I don’t really believe you’re ill at all!”, dealing with all this has not given me great confidence in doctors actually listening to me or believing what I say.

Most of the tests came back negative, but she is still waiting on the EMG results and has referred me to a muscle specialist. I think that the current ideas are ME or migraines plus some as-yet-unidentified muscle condition. Either of those could explain the symptom set, so we’ll wait and see what shows up! I’m pleased there are still options which might be treatable.

This morning our tumble drier arrived, which I am immensely excited about! The horrendous pile of washing had been attacked lovingly by my mother in law, but now we have the ability to put a stop to it once and for all, and actually sort out the wardrobe – hurrah! Not so sure about admitting that a tumble drier is an exciting development… I already feel like I’m 23 going on 80, oops.

We have also had a couple more mysterious donations, for which we are so thankful. I am repeatedly amazed that all the things we have needed have been given to us, and although I guess I should not be at all surprised that God can an does provide for us and keeps his promises, it is still a “wow” moment, every time – the small things and the big things both. What you only seem to read about in missionary books, has right now been happening for us. Every time there is a set back or a door slammed in my face, it has been so easy to despair even of life, but we have not stopped trusting that God is the “living one who sees [us]”(Gen 16), and he has seen us and helped us. It’s not the path we would have chosen to go down, but we are here anyway, and it is clear that whilst it is hard, we have not been abandoned for a moment. Thank you for looking after us, and hearing our prayers, and getting us through this. I suppose that soon enough I’ll be equipped to write some detailed post on providence, but for today, it is clear that “all things work together for the good of those who love God”(Rom 8).

Saturday Summary (NHBPM 10)

Oh yeah, still with the alliterations, because alliterations are awesome. That’s why “alliteration” alliterates with “awesome”. Although, it does to imply I will put up a summary list of the interesting articles I’ve come across that week, every Saturday. Ha. We shall see.

Disability Blogs

Disability Roulette (Sue Marsh, Diary of a Benefit Scrounger)
An analogy of the current circumstances for seriously ill and disabled people in the UK.
http://diaryofabenefitscrounger.blogspot.co.uk/2012/11/disability-roulette.html

A list of companies involved in workfare schemes (Boycott Workfare)
Boycott workfare are maintaining this list as new information arises, due to the DWP’s refusal to release information. Information on sources also given where status has been verified.
http://www.boycottworkfare.org/?page_id=16

New call to but DWP/Atos on trial for manslaughter (Mike Sivier, Vox Political)
Article: http://mikesivier.wordpress.com/2012/11/03/new-call-to-put-dwpatos-on-trial-for-manslaughter/
Sign the e-petition: http://epetitions.direct.gov.uk/petitions/41070

United Kingdom government denounced for crimes against disabled people to international criminal court in the Hague (Samuel Miller via JJ, Black Triangle Campaign)
A Canadian expert in disability has written a letter to the Hague requesting the ICC investigate the actions of the UK government leading to the deaths of sick and disabled people in the UK.
Read the letter:
http://blacktrianglecampaign.org/2012/09/23/united-kingdom-government-denounced-for-crimes-against-disabled-people-to-international-criminal-court-in-the-hague/
Co-sign the letter yourself at 38degrees:
http://you.38degrees.org.uk/petitions/letter-to-the-icc-at-the-hague-re-mistreatment-of-the-disabled-and-sick

Re-introducing “Dr knows best” (Kaliya Franklin, Benefit Scrounging Scum)
Talking about the dangers of coercing patients into having treatments and the government’s plan to replace freedom of choice with “do what our doctors say, or we cut you off”.
http://benefitscroungingscum.blogspot.co.uk/2012/11/re-introducing-dr-knows-best.html?spref=tw

New e-petition gives another chance for you to fight murderous disability benefit cuts (Mike Sivier, Vox Political)
Re-booting Pat’s Petition.
Article: http://mikesivier.wordpress.com/2012/11/03/new-e-petition-gives-you-another-chance-to-challenge-murderous-disability-benefit-cuts/
E-petition: http://epetitions.direct.gov.uk/petitions/41122

What About The People With Chronic Pain, Government?
An Australian’s perspective on the ignorance of the real cost of disability.
http://rellacafa.com/what-about-the-people-with-chronic-pain-government/

“The weirdest thing about my health” (Elle, Elle and the Auto Gnome)
Talking about constant variability in chronic illness, and how little it is understood.
http://elleandtheautognome.wordpress.com/2012/11/02/the-weirdest-thing-about-my-health/

If you can tweet you can work, and other such lies (Steven Sumpter, A Latent Existence)
http://www.latentexistence.me.uk/if-you-can-tweet-you-can-work-and-other-such-lies/

ESA reaches a Tipping Point (Sue Marsh, Diary of a Benefit Scrounger)
The current state of ESA, and upcoming figures and reports that might mean an end to the government being able to further delude its citizens into thinking it’s effective.
http://diaryofabenefitscrounger.blogspot.co.uk/2012/11/esa-reaches-tipping-point.html?spref=tw

Disability News Items

Atos mislead the government in securing its disability assessment contract (Steve Paget, the Guardian)
http://www.guardian.co.uk/commentisfree/2012/nov/03/atos-disability-assessment-contract?INTCMP=SRCH

Atos Doctors and Nurses Raise Concerns Over Signing Of Official Secrets Act (Welfare News Service)
http://welfarenewsservice.co.uk/archives/761

ME is often dismissed – but sufferers like Emily Collinridge are dying (Scott Jordan Harris, the Guardian)
This Tuesday saw the funeral of Emily Collinridge, a sufferer and tireless campaigner. Her mother asked that this article would be shared in her memory.
http://www.guardian.co.uk/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome?cat=commentisfree&type=article

Christianity

Discipleship Series (Scott Burns, Work in Progress)
A series on what true discipleship is; link goes to first post.
http://scottburns.wordpress.com/2012/09/23/discipleship-series/

Politics

The 10 most corrupt tax loopholes (Chris Parker, village Voice)
http://www.villagevoice.com/2012-10-10/news/the-10-most-corrupt-tax-loopholes/

Coping: Hope (NHBPM 9)

This follows on from”Coping“, “Who am I now?“, “What’s really important” & “Acceptance“.

“Surely if you have accepted a situation, you have ceased hoping?” – often, this is the unspoken question which causes people to hold on to denial about their situation. Are acceptance and hope really opposites though? I think that actually, it is only through acceptance that you can truly find hope.

When I say “hope”, I say it in the Biblical sense of the word, the sense of believing in something that can and will happen; not idle wishes. Something that can truly be held on to. Idle wishes may be fun, but we can’t place our trust in them and rely on them as a source of comfort. Hope however, is looking forward to that which we may not have, but know we can one day attain.

I think there are two things to hope in that are important, for those suffering. The first is this – hope that these hard times will pass. For those with a chronic illness, this could mean many things: the most obvious is hope of full recovery. But, I do not mean that to be the only hope one could have of things getting better – we know that most people with chronic illness don’t recover!

What else than, can we hope in, for things getting better? For those with a stable illness, there is the hope that we learn to manage it better, that the medications we are starting on can make life a bit easier, that getting care will enable us to do many things we can’t on our own.

Lastly, there is the hope that some of us have in a better life beyond death; in the end of suffering and pain. We know that illness will pass away, and end, and that it will not always be this way. For those who’s illness continues to progress, this is perhaps the only hope of improvement left. I don’t mean to say this in a “give up and die” sense, not at all – but in a “keep on going; one day it will be better”. Christians may feel wrong in hoping in death, but even Paul says that he wants to depart from the present suffering to be with God (Phil 1:21-24). We are encouraged in the Bible to hope for Christ’s return, and to hope in new life – it is not a sin to look forward to these things.

Life is also about more than improvement, and that brings me to the other thing to hope in – the hope of good things now. Even in suffering, there are good things, and focusing on them, being thankful for them, enriches our lives even in the midst of suffering. I am not saying to ignore bad things and “think positive”, but to acknowledge both the good and bad, and be thankful for the things that make our lives more enjoyable.

I have hope that going through illness will shape me into being a better person – even if the illness does not come to an end, there are good things from it. I have hope that what I write might encourage or teach others, even if I write it from a place of pain. I have hope that I will enjoy time with my friends. I have hope in my relationship with my husband, which brings great happiness to me, and hope in watching my kitten grow and play.

No matter how dark it is, there is always something bright to hold on to (although we might have to be inventive about it). It makes suffering more bearable, and coping become possible. Losing hope is what causes us to give up – living with it can keep us going, and what’s more, enable us to find happiness in the midst of calamity.

Landslide

The lack of posts is due to general exhaustion; moving has a lot of energy-sapping things that go with it, along with a tribunal next week to worry about. But, there are important things to post about which I have already put off for several weeks, so I shall endeavour to summarise them at last, and cross one more thing off my to-do list! (This is a happy follow on from the Rock and The Hard Place and and an update already!)

During September, I stayed a short while at my parents house. I was checking the property websites daily (obviously) to see if anything new came up – since we had already tried every option on there within our constraints, and although we had a “Plan B” property lined up for if we desperately just needed a roof over our heads, it was far from perfect. I idly checked on Gumtree one afternoon, although I didn’t usually, and saw a post which had just been put up for a flat within the area we were looking. So I contacted them, and they gave us a viewing for the next day.

The flat was on the first floor, and within walking distance of Greg’s work. It was quite small, and the bedroom was placed between the bathroom and the kitchen – meaning only about a 2-3m walk to get to either. The living room was totally separate from the kitchen, which had the golden ticket: a dishwasher. It was fully double-glazed. The toilet was situated next to the sink, which had lever taps, and the hallway was wide enough for a wheelchair. It was clean, and nicely decorated, and the landlord actually liked cats. Greg (who was viewing it) said he would have to check with me, but we would probably be saying yes.

The flat wasn’t put up on any of the property websites yet but the bureau that the landlord had contacted to advertise it were already thinking of a particular client to take the property (we had had previous flats before where we had rung almost as soon as it was advertised, and it had already been taken)… but the landlord said that they would like us to take it!

I am seriously tearing up just thinking about how wonderful a gift this place is.

That week were also given yet another monetary gift to help us out, from a totally random source, as well as both of our parents then giving us some money to help out with everything. At this point we were saying “don’t worry, we have enough money to do this now!” but they were insistent; “no, we want to help you, and you need other things as well as just moving flat, so use it for that”.

Part of the reason we were moving was to stop us getting into more debt – but all the gifts we were given, as well as my flute suddenly selling (it had been up for several months to no avail) meant we could afford so much more than just halting the progression: we were given enough to clear my overdraft and get out of debt! We were able to hire a man & van service (contact us if you want a recommendation; the guy we got to do it was a boss) which helped immensely, we couldn’t have done it without. The extra that our parents gave us enabled us to buy me a second-hand laptop – one that is lightweight (so that I can actually pick it up) and, significantly, not held together with duct-tape. (In addition to the duct-tape and weight issues, my previous laptop was at the stage of not being able to detect it’s hard drive until it had been trying to turn on for a couple of hours, at least one jack was broken, and it had started interpreting the power cord as a set of speakers.)

We will also be able to fit the flat out with a tumble-drier, and my parents are bringing us their old freezer to use as well. That doesn’t just mean extra food storage – frozen meals are cheaper and in much more variety than refrigerated ones; and frozen prepared vegetables are far cheaper than their fresh counterparts, ie: within our budget. (Yay, vegetables!) Tumble drier, dishwasher and freezer will mean extra on our electricity bill… but the new flat doesn’t have a key system, so the electricity is cheaper!

The market research I have been doing from time to time suddenly paid off, with a couple of special panel things which paid very well, as well as some cashback from a site I had been using. This meant we could afford a whole huge bunch of things: my birthday present, a new game for Greg, supplements (my parents also bought me some), bras I could actually tolerate, birthday presents for various family members and probably some stuff I’m forgetting.

We had a lot of difficulties with our phone line when we moved, which was long and stressful, but ended with us being able to switch to a different company, who gave us a better internet connection at a much cheaper price! We also don’t have to pay for a phone line anymore, which is brilliant because we frankly don’t use it.

I have also had some folk from the church come round, and talk about maybe having a Bible group at my flat. That would be amazing, as so far with me being ill our church has pretty much disappeared out of our lives, and we have been praying for a long time that they would actually support us and let us be involved. As it’s a young church, this is the first chronic illness situation they have had to deal with, and I am hoping that it will lead them to be able to minister to other ill people too. It’s an area that most churches now days are neglecting, but the Bible is very keen on it… so hopefully some good will result!

Finally, the new doctor we registered with didn’t respond to the diagnosis of ME with the usual “oh, chronic fatigue? You just need to exercise and think positively, dear”. It’s early days, but the first appointment seemed very hopeful! They also straight away switched the contraceptive I was on, because it’s been known to worsen people with migraine… and the new one is one of the ones where you don’t get a monthly bleed. Now, that was a prayer answer I didn’t see coming!

So, that is my huge, long, not particularly eloquent list of answers to prayer. Right now I am lying in a beautiful small flat, with a proper black-out blind on the window. The toilet is so close that walking to it doesn’t drain all my energy – same for the kitchen – and the pain in my legs is so much reduced just from that! I’ve been able to go outside every week, because it’s so easy to get out. When we worked out our budget, we actually have enough to live on, and we’re hoping that we might be able to start saving small amounts again, too!

Next week I have the tribunal for disability living allowance, which would pay for me to actually get home help and mobility help. As I’ve written about before, the system is very corrupt and the report against me was a complete farce. I am praying for justice to prevail, but I’m feeling confident – whatever happens, it is pretty clear that God will be taking care of us.