Tag Archives: anxiety

the little things

Yesterday was a dozy day. I tried getting up, but retired defeated, after eating. Eventually I showered, put on clean pyjamas and made it as far as the sofa, accessorized with hot water bottle and little old lady rug over my legs.

Today was to be better. I had plans. But time has this habit of vanishing. It’s lunchtime and the cupboards are not cleaned, the ironing isn’t done, tasks from 6 weeks ago sit on the table, shaming me. There are things to be doing, but I’m faffing on the internet. In my dressing gown. If the sun shines I notice the grubby windows. I brought a cake stand to a coffee morning on Saturday and it needed a good clean before we could put the buns on it. Luckily, I’m not proud- I wasn’t remotely bothered when I could have been mortified in front of the Irish dancing mummies. (I’d never cope if I was a competitive Dance Mom).

When I wasn’t doing any of the many things that I need to be doing, I read Emma’s post and recognised the feelings. You probably do too.

Then, on twitter, a moment of sanity. Words of wisdom from @SharonOwensAuth- housework all on one day, another day for writing, a day for other things, time to do nothing at all. Sometimes we just need somebody to point out the obvious. Little steps to make the chaos a wee bit more manageable.

from: http://thebookhabit.blogspot.co.uk/2013/08/monday-musing_12.html
from: http://thebookhabit.blogspot.co.uk/2013/08/monday-musing_12.html

it’s not rocket science…

… but it’s complicated.

There’s no formula, just trial and error. Stopping and starting. Resting. Re-framing ‘doing nothing all day’ as ‘pacing’. Considering being able to get out of bed before lunchtime as an achievement. Being paralysed with anxiety, unreliable, weepy. Pains in random places. The room spinning even when I’m lying down. Never feeling good enough for the people in my life.

You would not believe the paperwork that goes with having a chronic condition and being unable to work, the justifying one has to do, as if one had chosen this lifestyle.

‘Can you …?’  ‘I plan to.’ That fudge of a yes is the most I can say; there’s always the caveat that I may not be fit for it.

I would love to know that doing X + Y = too much. Life would be so straightforward then. Nothing is that simple. There are too many variables, all of them unpredictable.

There are many, many things I want to be doing. I can only hope to do a small fraction of those. Often I feel frustrated because I can’t do all the volunteering. Today I’ve been pacing the house, wound up to the highest of doe because I can’t do everything for a girl that she wants me to. (I know that if I were well and in work I wouldn’t be able to do it either, but I wouldn’t have the crushing guilt and anxiety then.)

Pesky ME. It’s not me, it doesn’t define me, but it plays waay too big a part of my life.

from: http://www.nobleworkscards.com/4308-ephemera-inc-forgotten-birthday-birthday-greeting-card.html
from: http://www.nobleworkscards.com/4308-ephemera-inc-forgotten-birthday-birthday-greeting-card.html

anxiety, busyness and sleep

I’m back at the volunteering. My brain is generally slightly more clear, but my body is still on a go slow- one morning of meetings; 5 days sleep. My plans for daily writing and regular recording of achievements haven’t quite turned into regular action, but I haven’t given up on the ideas yet.

My GP has me trying to manage without the anxiety tablets, which is grand as long as I don’t have to do anything. I can leave the house and interact with people, but I have some concerns about the quality of that interaction. “Look at my navy nail varnish!” and “Oooh, I love your new hair” were things I actually said to people at an event in Parliament Buildings this week. Luckily, I knew the people, but that fluffy, vague, smiley persona isn’t all that I am. How can I ever be taken seriously if I’m too hyper to think beyond superficialities?

Engagement exercise project team

Later in the week I had wee panics about getting dressed, opening envelopes, and making phone calls. There’s a woman somewhere thinking I’m a complete fool because I left a message on her landline giving my mobile number incorrectly. Twice. In the end I had to email because I couldn’t face another call. Then I gave up for the day and went to bed. It was 11am.

The event was super- loads of patients and small charities gathered to chat to politicians and policy makers, and to connect with each other. It was to launch a survey we’ve developed- we want to capture the real experience of living with rare disease in Northern Ireland in a way that it can be used to influence policy and practice. Even developing the survey was a massive piece of work, now we have to ensure people have the opportunity to tell us their stories, and then we have to process all the information. The hard work is only beginning.


Some of my colleagues are currently working on the first draft of the NI Rare Disease Implementation Plan along with other clinicians and civil servants. That plan is going to be launched by the Health Minister at our next event, on Rare Disease Day 2014, 28 February. We have busy, busy times ahead. That’s ok. We do it because we’re worth it.

Muscular Dystrophy

The official story of Monday… In Northern Ireland it is estimated that more than 100,000 people will be affected by a rare disease- that’s approx. the size of a city like Derry~ Londonderry. Each condition lacks a critical mass, but collectively, rare diseases are not uncommon.

Vasculitis Ireland

On Monday, 13 January, over 100 service users, carers, health care professionals, policy makers and representatives from the community and voluntary sector came together to encourage people living with a rare disease in Northern Ireland to take part in a regional involvement exercise.

NIRDP members with Simon Hamilton

The ‘Living Every Day with a Rare Disease’ event, hosted by the Northern Ireland Rare Disease Partnership in collaboration with the Public Health Agency (PHA) and the Health and Social Care Board (HSCB) took place at Parliament Buildings and was sponsored by Simon Hamilton MLA.


The event formally launched the ‘Living Every Day with a Rare Disease’ survey which will inform the development of the ‘Northern Ireland Rare Disease Implementation Plan’. This survey is the first of its kind in Northern Ireland, responses will help shape the way that future services are managed and delivered.


Our Chair, Christine Collins said, “1 in 17 people in Northern Ireland are affected by a rare disease at some point in their lives. They may be the only person they’ve ever heard of with that condition. They may have to travel hundreds of miles, and across the sea, to see a specialist. Specialist support in the community can be limited. Individual conditions are rare, but collectively, rare diseases are not.   A common feeling is one of isolation. This survey will give people a voice to explain their everyday needs, challenges and the obstacles they face.”

MSA Trust

Launching the survey Michelle Tennyson, Assistant Director for Allied Health Professions (AHP) and Personal and Public Involvement with the PHA, said: “We are committed to supporting people to tell us what it is like to live with a rare disease, listening to what they tell us and learning how best to provide services to meet their needs.”

stronger together

Dean Sullivan, Director of Commissioning at the Health and Social Care Board added: “The findings of this survey will be used to inform the commissioning of health and social care services for patients and clients with rare conditions.”

stronger together 2

Sharing his experiences with policy makers, Michael Holden said the survey was an opportunity to make sure his experience helped make a difference. “Being diagnosed with a rare disease, in my case Motor Neurone Disease, is life changing.  There are many areas we need to improve in terms of supporting patients. It can be difficult for patient support groups and charities to impact services, so I would ask everyone affected by a rare disease, personally or through a family member, to complete the survey and have their voice heard.”

Complete the survey here: http://www.nirdp.org.uk/living-every-day-with-rare-disease/


Register for the rare disease day event on 28 Feb here: http://www.nirdp.org.uk/rare-disease-day-2014-booking-now-open/




“Have you ever considered self harming?”

She hadn’t expected that one.

What was a true answer? In these circumstances, what was a ‘right’ answer?

Her child, home sick from school, sat to one side; her husband the other. The questioner was a nurse, a government assessor, sitting in judgement. What was safe to say; indicating the truth of the thing, without being too explicit?

“I told you that I went to see the GP recently because things were feeling worse… That’s what I was worried about.”

The nurse paused before she resumed typing.  What was she writing? Would the official report of this assessment be anything she recognised?

She fidgeted, and rocked a little the chair. Nothing made up about this anxiety. Her hands were cold, clammy. When was this going to be over?

“What stopped you?”

Divorce, miscarriage, bereavement; she’d never felt as vulnerable as government assessors made her feel. The last time, she’d cried nonstop. A gibbering idiot, uncomprehending of the mechanics of ‘systems’. There were no tears this time, just a feeling of being cut open and bleeding across the grey carpet of the anonymous building.

The Christmas lights across the street flashed with council cheer: pink, red, green, yellow, blue.

The keyboard silent, the nurse waited.

She gathered herself, and raised her head.

“The other people in the room”, she said quietly.

Meanwhile her body language screamed, “Move on, ask about something else, stop making me worse.”