It’s ok to ask for help

I had been crying for two/three days. With thoughts wildly varying from taking over the world to curling up into a ball and dying. Sometimes I was ok. And then suddenly I wasn’t. In-between the crying I was getting those headaches you get and then once I was feeling better it would start all over again.

I ended up calling my GP surgery and arranging a call back. My thoughts were getting darker and darker. The bright colours that make up how I see the world were getting darker and greyer. Comments online that usually just glide off were like tipped arrow hitting with deadly precision.

And I was becoming ugly and twisted like the world was around me.  I couldn’t feel anything positive, couldn’t laugh and couldn’t breathe properly.

Even my own thoughts and worries became weaponised against me with only the odd moments of sardonic wit whispering “You don’t get to be happy”.

It’s stress. I know it is stress. I love my home. I’ve loved it for 12yrs since the moment I moved in. And being ignored by the Council and people I believed in; MPs, MSPs, Councillors that I wasted time campaigning for…believed in – it’s just too much.

I could cope with pain. Chronic pain. And poverty. And being alone. And illness. But it turns out that my home…I don’t want to lose it. And I can’t stop it.  I don’t have any power.

I called Breathing Space and they talked it through.  Just verbalising it helped calm me down a little bit.

The Crisis Team are sending someone out.

I’m writing this all down. I don’t know if I’ll post it online or not but I want people to know that it’s ok to need help and ask for help.

http://breathingspace.scot/  – 0800 83 85 87

Weekdays: Monday-Thursday 6pm to 2am
Weekend: Friday 6pm-Monday 6am

The Samaritans is also available pretty much 24hr and although I didn’t call them, perhaps the information might help someone else. –

116 123 (UK)

116 123 (ROI)

 

And I called the NHS Crisis Team in my area.

I think pain was also a massive factor. I’ve had a few good months this year and have struggled this week in particular. I suspect I’m adapting to the new painkillers that were doing so well and it’s hard losing the independence and hope that was building. I was genuinely thinking that if my pain was managed then I could start to build a life again.

 

My biggest problem with the homelessness thing is the lack of power and support out there. Everyone; Homeless Team, Council, Politicians have used the words ‘probably’, ‘maybe’ and ‘possibly’. No one has actually offered wording or sentences that actually offer any tangible value.  And I know this is to cover people’s backs. I understand that. But what type do we live in when the best we can give to a chronically ill person who is going to end up on the streets is a ‘maybe’.

 

It all feels down to luck and in case anybody hasn’t noticed – I’ve not had a glimmer of luck in three years.   Everything I worked for, the degrees I put myself through, the decade I worked at the jobs I loved and the people I cared about were gone faster than you can say the word ‘illness’.

 

It’s a very lonely life. I’m useless at most social media things but Twitter allows for 140 character bursts which I why I like it. I probably don’t have the energy beyond 140 characters.

 

It’s a lovely community online. Yes, I’ve had Trolls and yes there are always going to be people that enjoy the misery of others but mostly I’ve had a good experience. I’ve met people I wouldn’t have met any other way and done things that I could only ever dream about – paintings, doing cute drawings and creating unicorns (the latter is a surprisingly divisive thing).

 

Don’t get me wrong – I’ll never understand people who come onto my account just to criticise the cheerfulness or a rainbow. I’ve never sought out someone just to let them know how shit they are.  I think they must be even more miserable than me to do so.

 

But most of all I really want folk to know that it’s ok to need help. I tend to ask when it’s far too late or not at all. This is the first time in my history that I’ve asked for help before the ship sailed.  And it was ok. Nothing has actually tangibly changed in my circumstances– except that people know I need help and it’s out there.

 

Don’t get me wrong – we could have all done without a Twitter-meltdown. But people were kind and wanted to help and wanted to speak because, and I say this despite still feeling darker, people are mostly good.

 

You are not alone. Even when it feels that way.

 

http://breathingspace.scot/  – 0800 83 85 87

Weekdays: Monday-Thursday 6pm to 2am
Weekend: Friday 6pm-Monday 6am

 

Samaritans (24 hour)

116 123 (UK)

116 123 (ROI)

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My Surgery

There is a Notice on the wall in my GP’s (General Practitioners) Surgery stating that if a patient talks about the surgery in a negative way on Social Media then this will be interpreted as “a breakdown in the relationship” and patients will be discharged. So effectively the Surgery has threatened all the patients by removing their care if they speak about the Surgery online.  It specifically mentioned Facebook (a medium that I avoid) but it was changed a week later to ‘ALL’ Social Media.

I did not think much of it, at the time, but it did make me realise that the Practice was becoming more and more threatening towards patients.

Every time I phoned the surgery (for an appointment) the secretary on the line was more and more hostile, varying from complete disinterest (in a horrible ‘I think you’re worthless’ way) to a stranger wanting to discuss your in-depth medical issues (despite having no qualifications to do so).  It became so erratic and often distressing that I started to feel sick about calling.

My Doctor is a good person who tries hard (despite how complex my condition is) so I do not want to leave my Surgery.

Today I walked in and there was a Notice saying that On-the-Day Appointments would no longer be given. Instead, over an unspecific length of time, a charge nurse (who will have no context or understanding of your case) would phone back the patient and access whether you had a right or need to get an appointment at all.  You will NOT be allowed to walk in and make an on-the-day appointment. Then those appointments offered (if you were deemed worthy) might not occur on the same day in either case.

I queried the receptionist about it (unfortunately it was the ‘I think you’re worthless’ one) who said “We need to think about the Doctors”

And I asked her “Shouldn’t you be thinking of the Patients?”

She shrugging, looking utterly bored.

So effectively there are no One-the-Day Appointments for people in my Town.

As someone who is chronically sick, during flare-ups, it is traumatic enough without having to beg a nurse for a mere appointment.  At a time when disabled people are being discriminated against by DWP, Tory Government and NHS cuts – you would expect some humanity from the NHS in Scotland. I see no benefit to restricting access to NHS services.

Am I wrong? Is it ok to threaten patients’ freedom of speech on Social Media? Is it ok to restrict access to on-the-day appointments and leave it in the hands of a nurse rather than a doctor?

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Ombudsman

Just found out today that The Ombudsman has upheld my complaint against NHS Ayrshire and Arran. Finally I feel like there’s a possibility of being heard regarding the need to improve staff training and attitudes regarding complex medical problems. Soon as I have more info I’ll keep you posted.

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