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
-Hankies

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
Kindle
Laptop
Phone
Sewing stuff
China tea cup and saucer
Posh hand cream
Open windows and curtains
Stretches
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.
 

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...

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.  

Im off to the Tory Conference please share your #CareStories #CareIdeas

Finally I have some time to write this - it's been a busy few months.

I am off to the Tory conference next week as part of the Leonard Cheshire Access all Areas scheme. Putting personal political feeling aside I'm both excited to go away, I love adventures and new experiences, and full of trepidation as I know I will be exhausted and it won't be easy changing minds or even opening them up.


I have chosen to focus on Social Care only - other amazing women Kali Franklyn and Steff Bensted are focusing on Welfare reform.

So why Social Care? In part the timing is good as the Care & Support Bill is working its way through parliament at the moment - it goes to the commons in mid October.
You can read some fact sheet here: Fact sheets

If you receive social care or think you need it this bill is massively important. I'm focusing on three things:

1. Lowering the proposed National threshold from Substantial/Critical to Moderate. Currently every single council with a social care department can decide what level to set its threshold at - threshold being the line you need to cross to get care. Many are setting the bar so high its a council of last resort.

The national threshold would mean all councils have to use the same criteria at the same level - so far so good, but it's still too high.
Im arguing that if we have a moderate needs national threshold it will: 

-Save money in the long run as many will need small awards often less than £10K a year and can maintain their independence at that so they don't fall into boom and bust cycles of ever more expensive care needs.

-Particularly for people with mental ill health a small ongoing package of support could mean the difference between coping and not in fact for some may lead to recovery, rather than the ever present fear of falling off the cliff edge - I'm talking three hours a week to make sure shopping is done, paper work sorted etc. Not even the level of "true independent living".

-Be an investment in working aged disabled people that would enable them to make choices about how they lived their life from volunteering, studying, working, bringing up kids what ever - if they are unable to get much needed support then all those aspirations are just that aspirations - Yes if people had moderate support the different to their lives and that of loved ones would be massive. Let's not forget unpaid carers in here.

I could go on but you get the picture I'm sure - so please reply below and share your Care Ideas - If you have tried and failed to get care due to thresholds being too high, what would a small award of say 10 hours a week of enable you to do? What difference would it make?

My second thing to talk to people about is portability of care: Something Baroness Jane campbell has lobbied hard for - Basically if like me you might want to move but have finally sorted a fairly OK package of care and support the idea of moving even to the next town a pretty horrific idea because it means:

1. A new assessment and you might lose all the current support because of different rules see my first argument. 
2. The transition from one place to another is bound to fail, not get sorted in time, be a nightmare or all three and you might then lose the great new job, not get your house, miss deadline for school all sorts of things you don't think about if you don't need care.

So the portability of care idea could be guaranteed:

-You keep same level of care paid for by authority you were in before your move for 3 months until new assessment can be done.

I totally agree with Jane on this and while she withdrew her amendment - it is something we need.

What opportunities have you turned down because you feared losing the support you already have, would not be offered somewhere else, or if you did move whats been your experience?

I won't have long with anyone - I want to change the narrative to talk about social care as an investment in people, how working age disabled people should not be lumped in with older people, who let's face it have very different needs. I'm not taking away from those needs, simply recognising as a 43 year old woman I have different needs. 

Lastly and it's very personal I blogged about it recently - dignity in care, how investment in social care goes beyond the person, it's about investment in the massive industry. 

-Zero hour contracts

-Ever changing staff

-15 minute care visits

-Not paying for travel time 

-Little beyond statutory training for care workers

I could go on I have to pick and choose so again

Please share with me your Care stories, Your care ideas. The more personal I make the story the more impact it might have. I will also if I have time make some little postcards with some quotes on them and leave them around bars etc. 

Leave a comment for me on this blog and share it as widely as you can.

  
You can leave an anonymous comment or email me at bethk.morris@gmail.com

My "virtual" memory keepsake box

As summer turns to autumn, so does the time when spoons are low, adventures are rare, and spoons are counted in hours or even minutes. It's hard to hang on and think I will get through this and be well enough again to have a few adventures.

This isn't maudlin, it's a simple reality of life as a spoonie - its almost four years in now and while still unpredictable in nature - I have a slightly better handle on listening to my body. So this blog is a homage to my summer - a chance for me to create and store away a few memories to look back and and smile...

But first a dedication to LM - we have just celebrated our first wedding anniversary - was an amazing day, we went to a very posh Michelin Starred restaurant to celebrate with a little help from my wonderful sister & brother in law.

Our wedding day 2012

Every year since we got together we do a B loves P - kind of our reminding ourselves what's important about being together

the Traditional B luvs P

Besides the sea I'd say jumping the waves - more like hobbling through them :D, we had a fab couple of days in Suffolk.

Then we went camping - I was maybe a little ambitious about the amount of time i could manage, but was still lovely to be away, besides the almost wheeling into a canal incident it was all good :D. We ate too much, drank too much and played board games..bliss.

LM doing something with a pineapple

me discussing the finer points of life with a scarecrow

Dahlia's I just love them

LM & friends doing a cataolgue pose..my husband as ever does his own thing

and then it was home time and back to life..have loads of photo's, and a few more memories to go in my virtual keepsake box. I'm sitting here tonight thinking oh arse I'm out of spoons how did that happen I mean I only....

-did some healthwatch chairing stuff

-went out for our anniversary

-saw my son

-did a bit more healthwatch stuff

-and baked...

its not like i did much :D

Note to self spoons matter especially when the first sniff of autumn appears and it's time to slow it down and revert to normal spoonie life..good bye summer it was a blast.

Me and LM

It doesn't matter where you go in life, or what you do..Its who you have beside you

may your spoons be with you x

5 different Care workers on 5 different visits #Dignity

Imagine this, you open the door to a complete stranger, they say hello. Slightly bashful and coy, you invite them upstairs, explaining just how you like it as you go, slowly peeling off your pj's, the ones with the coffee stain and some unidentified yellow substance that might be vom. You look away coyly as they go to help you, brushing your skin with their rubber gloved hands..

Stuttering, you explain hair first, then you can do your front but can they do your back. This stranger you met such a few short minutes ago begins to wash your hair as you sit passively, trying desperately to find some inane small talk to get over the embarrassment you feel at having this stranger wash you because you can't.

This isn't some sexy stranger 50 shades of grey sex romp it's the reality for many people who, like me, have social services funded care.

The first time is always the worst but once you get to know them and they you, and if they are bright and chatty, you eventually get over the "oh God I'm naked and I don't know you" bit.

BUT

Imagine if every care visit is like the first time, that you don't always know who will come to your door, that like me you might have five different carers in five visits. Is this OK? Is this what care is?

I can't always verbally explain what I need, sometimes I feel so god awful, brain fogged and sore i don't want to have to explain, or have to tell yet another stranger about my illness or have them look at me and try to hide the obvious "but you don't look sick" thought as it crosses their mind.

We talk a lot about dignity and affording care,but when profit is put before care, when the Care coordinators forget there is a human being on the receiving end of their rota decisions, people like me have just another tiny bit of their humanity stripped away.

I mean would you want to get naked in front of a stranger and let them touch you intimately?

I accept i need it.
I accept someone has to help me.

But I don't accept that it should be OK and when I raise the issue with the agency I'm met with promises to change it. It should never be ok in the first place.

Good Social Care - Makes the difference

I have been a little absent over the last few months, in part it was heeding the red flags of depression but more recently it was having the chance to get out and live a little.

A few things came together at once for me, all positive and while im typing this at 7.45am - feeling like death warmed up, half dreading the thought of heading into London to attend a training session for an exciting venture later in September - The fact im even able to do this trip at all is significant for me.

After 3 very long years of learning to cope and progressively getting worse, I was assessed in February by my Adult Social Care department about needing some more support. LM is amazing and i wouldn't manage now without him, but working full time and doing 80% of the household chores and support me is a tall order.

I dont want it to be that way, but it is and we cope. My lovely social worker, listened, didnt judge and understood. This for someone with an invisible illness that is used to being dismissed, ignored and generally told get a grip your not that bad was a revelation.

I get 3 x half hour visits a week from lovely carers, the agency itself is a bit rubbish but the carers are fab. That little but of extra support has taken me from struggling to coping, leaving me a bit more puff to manage other things.

At my review, we talked about how much i wanted to volunteer and get out more, but knowing i couldn't commit to a regular thing - I just cant sustain that level of activity or be reliable enough, I talked about my hopes to be part of the New Local Healthwatch and make a difference but within my limited capabilities, and how i wanted to just go out sometimes - in short have a bit of a bit of an independent life.

Blow me if lovely social worker didnt say ok how about 5 hours a week, maybe more if you need them - for a PA (Personal assistant) to support you to do stuff. Wow :) Id heard all the horror stories of people struggling to get stuff - and had that moment of should i really accept it.

It took a while, but eventually I got my fantastic PA - Miss S, she is bright, adaptable, friendly and its just easy. She is booked to come with me today, so while im dreading it, i know I can do it because she will be there and make sure im ok.

having her means not only did I get involved in Health Watch, I was appointed as chair if my local one. They know Im sick, understand I cant always manage to be here there and everywhere, we do lots by email, its flexible and I can bring my skills and knowledge into play but in little bursts of stuff rather than push myself too hard.

Some stuff has had to be dropped for a while, ive taken a massive step back from actively campaigning - but rather than a national focus, its a local one - being chair means I am in a unique position to really challenge services, especially ones aimed at sick and disabled people, after all I know dam well how it feels to get bad care, to be dismissed and isolated.

The Social Care bill is winging its way through the Lords and Parliament, the 2 biggest things we need to ensure is right is eligibility and portability. In other words its a myth (I wish I had some stats) that all social care bills are for 10's of £££££ a year many are like mine less than £6000 and is the difference between living and existing.

We need to campaign hard to get the national eligibility criteria to be set at moderate not substantial needs - or many many 1000's of us will disappear back to the shadows.

Ita another fight in a big list of fights - If i could encourage you to do one thing get involved in your healthwatch its there to be the independent voice of the consumers of health and social care - it has some statutory powers to make a difference. if lots of us get in there and lobby and work at a local level, we could seriously make a difference and we might just end up with a Social Care system fit for purpose..ours not theirs. So much emphasis is on the elderly (thats ok) but working age disabled people like me need support too....Healthwatch is also about health services.

you can find your loacal Healthwatch via here http://www.healthwatch.co.uk/

Update:

I started this blog weeks ago - but like many things I got sidetracked and havent had chance to come back to this. The exciting training I was off to, was the Party Conference Training for activists - Im being supported by Leonard Cheshire to go to the Tory Conference and lobby on Social Care. I will blog soon about the specifics.