Saturday, 26 October 2013

Flare up plan #fibromyalgia #spoonie

Its cold, damp and the clocks are about to go back. That means only one thing, I need to get my head into winter mode and allow myself longer to recoup energy and try to make sure what little i have is used for things i want to do and not wasted.

I have no amazing tips or wisdom, its really down to planning ahead a little.

Some givens:

-I will have a flare up.
-I will spend more time either in bed or my recliner chair.
-I will have more pain and less energy.
-I will spend more time at home and less out gallivanting.
-I know 100% I will get through it.

That might seem defeatist but it's not meant to be, this is my fifth winter, the first three were spent trying to carry on as usual and it resulted in ever increasing relapses and I don't fancy another one.

Things that make my life easier:

Lotions, Potions and pills
 If you haven't already, book an appointment with your GP and ask for at least two months worth of meds in case you can't get out - failing that make sure you are registered with your local pharmacy and get them to collect and deliver meds.

Stock up on a few things that make a different my personal list includes:
-Deep Heat
-Freeze gel
-Multi vitamins, especially B1 and Vit D
-Tiger balm - I find a little bit at the base of my head can help
-Extra medication

Upstairs, Downstairs (unless you live on 1 floor then its in 2 rooms)
 I'm either in bed or on my recliner chair when I'm at home - regardless of where I spend time, I make sure things are to hand as having to go up and down stairs or room to room just takes energy I don't have. So I have two duplicate boxes of everything- I keep one in my bedroom and one in the living room.

-Tablets etc - I have a pencil case with my meds in, I just make sure I have one in each box
-Bottle of water
-Cardigan/wrap/bed jacket of choice
-Something to read - mag, book, kindle, what ever
-Water spritzer for those hot flush moments
-Boiled sweets - I find it helps with a constant dry mouth sensation from the meds
-Notebook and felt tips

You can put what ever you want in it, but having things handy that are always there is great if you wake up and know it's a bad day and don't have to worry about trying to gather things together.

Do you think I'm sexy...
Getting dressed. I found long ago that the more lax I was about getting washed and  "dressed" the more it affected my mood and very quickly created a cycle which was very hard to break. I don't like the idea of giving up and reject the notion when it comes to positive choices like using aids etc but in this instance it's very true. The excellent fly lady website says get dressed to your shoes every day. The idea is simple, if you get dressed and ready you mentally prepare for action.

To adapt this for a spoonie day where you might want to be ready for action but paring it down and recognising this might be a flare up kind of day.

Wet wipes - yep I hold my hand up and say there are days when the mere thought of a shower is too much, even with carers. But if I can I have a proper wash.

Dry shampoo - see above but it does at least give you a sense of looking passable.
I don't wear makeup much so it's no biggie but I do try and moisturise.

Getting dressed, some days that's a big fat no but I own some lovely PJ's and Jogging type outfits, the comfy ones. Comfy knickers and those soft no wire bra things. Even if all else fails and it's a wet wipe kinda day - changing out of what ever I slept in into some nice jim jams/jogging stuff makes me feel better and reminds me to make that effort and be ready for action.

Snacking V real food
Its so easy to live on toast, and cereals when you feel crap - I know I've done too much of it this week, last week of term and me being off colour was never going to end well. But back to planning ahead even if you have zero cash having some basic tinned stuff in is better than toast.

Flasks - when I lived alone I filled a flask with hot water and added cuppa soup, tea bags and milk cartons (the little things you get from cafe's) to my box of tricks so at least I had something nutritious, taking meds on a totally empty stomach is grim. Plus i only needed to get up once.

I will get through it memory box
When days stretch into weeks it's really easy to think you will never get back on your feet, the flare up will become permanent and the little rays of sunshine are gone forever. Even if 99% of the time is hard, you still need hope it will get easier at some point or at least less bad.

our amazing anniversay trip to a posh resturant
I make sure I have pictures of good times around, videos I can watch and smile of good days. I keep in touch with people via the Internet and I love getting letters. I must ask this year for friends to send me letters, it beats the brown envelopes.
Plans, I love making plans big or small and it makes me happy.
I love motivational quotes and just being open to the fact I can do this helps.

Other stuff that makes me happy
Sewing stuff
China tea cup and saucer
Posh hand cream
Open windows and curtains
Wobble walks
DVD collection of Sherlock Holmes
Miss read Books
Phone calls

One tidy space
I'm a bit of a clutter bug and not a naturally tidy person, but I do try hard to keep at least the living room tidy. When you live virtually in one room making it as nice and bright as you can helps oh and open the damn curtains, natural light helps.

This blog post has gone on for long enough, if you are newly diagnosed, or still struggling with boom and bust, it's not easy I know. Be kind to you, and while pacing is commonly used - planning isn't. I find I can manage more, feel better about me and generally cope when I plan ahead just a little bit and forgive myself when i don't. This list seems huge and when you feel crap, it's overwhelming but if you do one thing at a time you will quickly have your own plan, this just happens to be mine.

Please do add your tips and ideas - I'm sure i haven't thought of everything and it's always good to hear other people's stories...

Other people's tips and ideas...

-Travel kettle 
-Tray with hot drink making things and snack box
-Ipod with fave music
-Talking books *free from libraries
-At home library service *they will bring things to you and its a nice way to see people.
-Teasmaid - I'm very tempted by one I must say
-Lots of pillows *pretty ones
-Pretty bed linen/throws/cushions
-Mobile beautician/hairdresser 
-Skype - you don't need to do video chats but it's free and easier than phones

***and if you are reading this and are less housebound but know someone who is, then do send them a card or letter with newsy gossipy stuff in it or even a saw this and thought of you type thing. It really really does make a huge difference. 

I will add more as people send me them.

Wednesday, 23 October 2013

Conversation with a #spoonie Vlog

I've had a rough day and I know I've been skating on thin ice again. When you have Fibro it's like dancing the tango with a shadow on a knife edge; there is always the danger you will over step and fall off. I'm not sure I know anyone with it that doesn't sometimes slip up. The trick I've finally learned is to STOP!! when you get all the warning signs, pushing on can only lead in one direction; relapse.

Yes I know I don't exactly look attractive but fibro isn't always attractive...My husband decided to have a conversation with me :)

I love that I have his support to do what I do, lots of the time I look well and sometimes I look exactly as I feel...

Saturday, 12 October 2013

Looked after but not cared about #SocialCare

I've tried, God knows I've tried to truly express my distress, anxiety and shame at needing care and accepting that I needed it. I shouldn't feel shame or guilt, surely it's just a case of accepting I need some extra help, but I do feel it - right to my bones.

I feel ashamed about what others think of me, after all I look well don't I. Ashamed I reached a point where the simple task of trying to get myself clean and dressed in a daily basis was leaving me so exhausted and broken I couldn't manage anything else and I was beginning to avoid doing it, spiraling down into a cycle of spending days in my jim jams and not going out and my husband having to help me and getting upset as I became more and more distressed. Shame is not a good feeling to have.

That knot of anxiety I try to suppress every time I open my door on care days to see if it's a carer I know or yet another stranger - Ive blogged before about it, but I tried to make light of it. I'm a size 22, I'm not very body confident and I loathe having to get naked in front of someone that isn't my husband.  A cruel voice in my head chips away about what they think of me piling on my shame; not only am I disabled but I'm a fat disabled too. I cover my embarrassment by being chatty and lighthearted covering up my fears and frailties - see look I'm OK really, but I'm not and the absurdity cannot be ignored.

The decisions made by the care agency, perpetuate the sense that I'm not important. They rota staff on back to back calls, safe in the knowledge they can use the "oh but we are allowed a 30 minute leeway" to cover the fact they allow no travel time between clients. Visits are timed to the minute with barely time to feel like I'm cared for, the staff are lovely and do their best but by the time I'm washed & dressed there is no 5 minute chat with a cuppa - it's write in the book and off to the next client who's been waiting 15 minutes already.

"Assisted with shower, dried hair, helped to dress, had a chat" sums up my care.

Poor communication, never knowing who will come or if the times will change or even if they will know my name if I have been added at the last minute - I know my surname is a mouth full but my name is Beth even that would do.

At first it was OK I have to say, I had the same 2 carers week in week out for a few months but recently its begun to change and I have gone from not really wanting it to this sense of shame that reduces tough as old boots me to a sobbing mess.

Having care shines a light on my darkest fears and truths, the things I try so hard to play down despite what others may think. My shame is a well told story in my life and one I try so hard to re frame, I never asked to get ill and no matter how much I kid myself this is just my new normal it's not.

It's all done nicely but scratch the surface just read this blog Lucy in bed blog: SS Review or this one my daft life or this one her name was Gloria I know I'm not the only one to know the truth. Care is not how you might imagine it to be it's become about process,systems, contracts and decision makers hiding behind their rules and procedures and people like me caught in the it's "My Care my Choice" are left demoralised and just a little bit sadder that we are not truly cared for, we are just a name on someone's list.

If we truly want to change things then we must change the way we view carers, give them better pay, better hours and the recognition they deserve. Only then will be begin to address the system failure to care. 

The next big thing is integration person-centred Health and Social Care but how can the system really change when the companies tendering for contracts, commissioners and policy makers continue to say the words but fail to act.

After Thought:

It occurred to me after I pressed publish - I also see another side of Social Care - in addition to the agency care paid for directly by my council I also have direct payments. This pays for my fantastic PA - her role is to support me to access the world, she helps with paper work, supports my role as chair of my local Healthwatch, baking and sewing she basically helps me be independent and do things I enjoy. 

I love that my council has supported this but it also shows in stark contrast my experience of personal care as outlined above. It was impossible to find someone for 1.5 hours of support which means I rely on agency staff.