My Life Before GCA/PMR... : I was interviewed... - PMRGCAuk

PMRGCAuk

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My Life Before GCA/PMR...

108 Replies

I was interviewed earlier in the week by the Press Association, in London. They wanted to talk about my work as a "Soul Midwife," (aka End of Life Companion)... even though, sadly, I have not been able to sit with anyone in over a year...

The link below is to the article published by the Bastille Post Global. (?)

bastillepost.com/global/art...

108 Replies
peace_lover profile image
peace_lover

What a great article and photos. It’s a reminder that you (and indeed, all of us) are more than just someone who is a victim of GCA/PMR, but a person with a life, family, interests and jobs who got lumbered with this sh**ty disease. And one day in the not too distant future you’ll get that life back again. X

in reply to peace_lover

So true, PeaceLover, so true!!!! ...and from your mouth to God's ears!, we will ALL get our lives back! xx

Rimmy profile image
Rimmy

A wonderful article Melissa which does you credit and highlights how lucky we all are to 'have you' on this forum sharing so many of the intense experiences which have also revealed a great deal about 'who' you are. We have also come to learn here how some of your experiences with your family have framed many aspects of negotiating your own health and well-being - and how crucial some emotional responses can ultimately be. As PMRpro said recently you are 'one brave woman' and any of us would surely like you around for us when our 'time' comes - BUT for now you really need to conserve some of your amazing empathic insight and energy to recover your own health - something you most certainly deserve !!

Love Rimmy

XXXX

in reply to Rimmy

Thank you Rimmy... You are (as always) too kind. Not sure how "brave," I am... but when life throws "stuff," at ya.... you have no choice but to respond. I miss being a Soul Midwife, but, you are right, for now I must be content with tending to me! ❤️

Rimmy profile image
Rimmy in reply to

Yes Melissa maybe 'no choice but to respond' - but 'how' a person responds is quite another matter ...

XX

in reply to Rimmy

Yes, I guess that is true.... ❤️

Angiejnz profile image
Angiejnz

Wow - no jokey reply but total respect for your vocation x

in reply to Angiejnz

Thank you Angiejnz. xxx

SnazzyD profile image
SnazzyD

Ooh! I was looking to train that before that particular life stopped nearly two years ago! After being a Marie Curie nurse along the way, I always had a leaning towards it but got sucked up in whatever path I had. You’ve switched that light back on, thank you. Perhaps in the future??

in reply to SnazzyD

Do it SnazzyD!

❤️🌺💔

in reply to

❤️ Thank you

Rosbud profile image
Rosbud

What A lovely thing to do , my Sister-in-law is also A Soul Midwife and I so admire both of you , helping people across is so wonderful x

in reply to Rosbud

What's her name? Did she train in Dorset?

Rosbud profile image
Rosbud in reply to

No she works in the West Midlands xx

in reply to Rosbud

Cool.

Sandy1947 profile image
Sandy1947

Beautiful article and pictures. I admire your work.

in reply to Sandy1947

Thank you Sandy.

Nerak12 profile image
Nerak12

Wow! Just read the article. You’re very brave and much respect coming your way from me. I can empathise with many of the things written in it through my own experiences. We do death very badly in this country, although there have been many improvements of late. I hope you feel well enough to return to your vocation at a later date. Xx

in reply to Nerak12

Thank you Nerak12. xx

Jean56 profile image
Jean56

You are one amazing lady, totally in awe!

in reply to Jean56

Thank you, but I just swing at what life has thrown me ... like everyone else. ❤️

GOOD_GRIEF profile image
GOOD_GRIEF

You're such a deep, rich soul, Melissa.

The world is lucky to have you.

in reply to GOOD_GRIEF

Wow GG, what a lovely thing to say.... thank you. ❤️

PMRCanada profile image
PMRCanada

Wonderful article Melissa! And the accompanying pictures are beautiful. Might I say as a photographer for 22 years, I was most drawn to the one of you surrounded by lavendar.

Others can now appreciate how becoming a death doula can aid with our own grief, making this volunteer opportunity especially rewarding and fulfilling. You have those special skills it takes to do this important work. Helping people die is vital, endings are tough, and in some cultures we're not good with death (quite the opposite, there is a focus on healthy youth).

Thank you for sharing your new "life's work" focused on death.

in reply to PMRCanada

Thank you PMRCanada, I'll be sure to tell my husband... he is the photographer, for all except the really "professional," looking one. Thanks for reading and your kind words. xxx

stellafmdm profile image
stellafmdm

Lovely Melissa, you are such a gift to all of us!

in reply to stellafmdm

You are sweet to say that, thank you.

Footfairy-1 profile image
Footfairy-1

Oh Melissa, you are beautiful inside and out x

in reply to Footfairy-1

Thank you Footfairy-1, I appreciate you saying that! xx

Rose54 profile image
Rose54

Always hold your head up high you are a truly amazing and beautiful women .

in reply to Rose54

Thank you Rose54.... thank you.

Yellowbluebell profile image
Yellowbluebell

Loved the article. I didnt even realise there was such a thing in this country.x

in reply to Yellowbluebell

Thanks. Yup... check it out . >>>>> . soulmidwives.co.uk/

MartiFL profile image
MartiFL

Had never heard the term “doula” before, so happy to learn from the article.

And what beautiful puctures of you. I also especially liked the one of you seated next to the tree, surrounded by lavender.

Thanks so much for sharing!

in reply to MartiFL

Thanks for reading MartiFL! I'll tell my OH you liked it, as he took it! xx

Pipalina profile image
Pipalina

What a wonderful article, Melissa. You bared your "soul" and it showed you for the very special person you are. Whilst your GCA/PMR may have pretty much consumed you for the last year or more it certainly doesn't define the glorious person you are! Kathy xxx

in reply to Pipalina

Thanks Pip! And you're right... giving that interview, reminded me that I am so much more than GCA/PMR!!!! xxx

Louisepenygraig profile image
Louisepenygraig

It's a lovely article, I'm sorry though that you've had to suffer such losses. I sat with both my parents as they died and, more recently, spent time sitting with a dear friend when she was near the end. Each time I've thought of doing something similar but don't think I'd have the energy. Well done you.

in reply to Louisepenygraig

Thank you Louisepenygraig, No I don't have the energy now... but I WILL get back to it.

You really lifted my spirits thank you.

🤗 xx

in reply to

Awe... that's good! ❤️ ...and now you've lifted mine!!!!

karools16 profile image
karools16

Outstanding article Melissa. Our Pastor's sister died last night...cancer. She had someone with her, apart from family, to make the transition peacefully. I so identify with you when you say you left your Mother to nip home. I was in that situation, too. Went home to let the carer in, have a bath, got call to say Mother gone. Felt guilty that I hadn't been there.Dad died 3 months later, at home, from a broken heart. Married 64 years.My sister is the Admin director at a S.African hospice and a trained bereavement counsellor. xx

in reply to karools16

Yes, karools16, I felt guilt about not being with my Mom... until I realised, she didn't want or need me there! Knowing my Mom, she was probably saying; "When the hell is she going to leave?"

karools16 profile image
karools16 in reply to

Ditto My Mom probably too. My sister says often people who are dying, actually WAIT for their loved ones to leave, so they can die.Hard. xx

in reply to karools16

I believe that.

SheffieldJane profile image
SheffieldJane

What an interesting article, although we’d already discussed your role as a soul midwife. There are some great photographs too.

Such a constructive way of using all that grief and removing fear from the final frontier. I would love to do it, as I said to you before. ❤️

in reply to SheffieldJane

You'd be great at it SJ!!! soulmidwives.co.uk/

SheffieldJane profile image
SheffieldJane in reply to

Thank you! I now have a goal to work towards. See you soon ( with luck and a fair wind). X

in reply to SheffieldJane

🤞🏻

Deep & moving Mel. Beautiful photos. Your inner strength shines through.

in reply to

Thank you PD, thank you. xxx

York54 profile image
York54

Melissa, what a lovely soul you have. Thankyou for sharing this with us. I never realised that we had such a thing, had heard of birthing partners only.

I lost a dear friend in September and found it an honour and privelidge to be with her when she died. ❤️❤️❤️

in reply to York54

You described it perfectly; an honour and privilege. xx

York54 profile image
York54

❤️❤️ Xx

York54 profile image
York54

Oops please excuse my spelling mistake!!

in reply to York54

stop!

suzy1959 profile image
suzy1959

My father died on Thursday , at home, peacefully. This has been the first time I have watched someone die, although I have worked in a hospice previously. The family had to fight to keep him at home at the weekend- we discovered the out-of-hours 111 service is in no way appropriate for someone who is dying. They insisted they would take him to hospital as his DNR had been allowed to lapse. I had visions of getting the police to stop them! Luckily they eventually agreed to leave him. He was 89 and had dementia, but was still clear that he wanted to be at home. So I would say that he had a very good death which has been such a relief.

Good on you for making a silk purse out of a sow's ear and I hope that you can get back to it soon. xx

in reply to suzy1959

Ohhhhh Suzy, I am so very sorry for your loss.... what an ordeal. I am happy you were able to be there with him. It can be a harrowing experience, when it's a loved one, but the experience soon melds into a priceless memory, that you'll treasure forever. I'll keep you in my thoughts and prayers.

Chrob profile image
Chrob in reply to suzy1959

Sorry for your loss , but how good are the words , At home , peacefully. Carol

Telian profile image
Telian in reply to suzy1959

So sorry for your loss Suzy, much love at this sad time. X

SheffieldJane profile image
SheffieldJane in reply to suzy1959

Well done for fighting for his right to be at home. Bless you and your family.🌹

karools16 profile image
karools16 in reply to suzy1959

Sorry for your loss. Our Pastor's sister died Thursday...cancer, still young. Good to know that he had his wish to die at home. xx

Yellowbluebell profile image
Yellowbluebell in reply to suzy1959

I.had to fight to get my dad sent home to die. That's what my parents had agreed and after I stamped my legal feet we finally got him home. I feel sorry for any family fighting with hospitals to just get loved ones home. It's bad enough going through this with out having to fight. Your dad would have still realised he was at home and have been peaceful.becaise of that.xx

PMRpro profile image
PMRproAmbassador in reply to Yellowbluebell

Strange isn't it really - here they send people home and are very good at caring for them even on an acute ward and identifying "end stages". But you'd think the hospitals would be keener, like here, as it improves their death rate figures.

Yellowbluebell profile image
Yellowbluebell in reply to PMRpro

Definitely not logical.xx

Chrob profile image
Chrob

You do know I’ve got you booked don’t you xx

in reply to Chrob

Hahahahaha. Ready when you are! Let's make it a long way off though!

Chrob profile image
Chrob in reply to

Yes indeedy , we have got lots and lots of stuff to do first .

in reply to Chrob

For sure!

Jackoh profile image
Jackoh

Really good article that they have written Melissa. Never heard of an end of life doula until you have written about it. Knew about birth doula. Maybe this might encourage others to take up this role if they feel led to do it.

As an aside I always feel so sorry for those in hospital who have no visitors and just have to sit there during visiting times perhaps because they have no family. It’s always good to be there for folks- it makes such a difference to their lives- I’m sure it’s what we would want if we were there in a similar situation.

in reply to Jackoh

Thank you Jackoh... Yes I worked in the hospital on a Ward... and always felt bad for the patients with no visitors. When I'm well, I want to look into starting a Soul Midwife, volunteer group, at a Prison. Terminally ill inmates, get terrible medical treatment and then are just left to die... I know these people screwed up, but that (to me) is cruel and unusual punishment!!!!!

Jackoh profile image
Jackoh in reply to

Yes that would be good Melissa x

SheffieldJane profile image
SheffieldJane in reply to

I would definitely volunteer for that. I have always wanted to shine a light in a prison.

in reply to SheffieldJane

COOL! I have my first Volunteer Soul Midwife! xxx

SheffieldJane profile image
SheffieldJane in reply to

This idea could fly. Hang on to it. 🦅

in reply to SheffieldJane

Yup.... it is much needed and I don't think anyone is doing it in the country, although I need to do some research....

SheffieldJane profile image
SheffieldJane in reply to

If this comes to fruition, it is another uncanny thing we have in common. Many years ago a prison governor asked me to become a prison officer, where he was trying to do something more enlightened. I declined at the time but it has stayed with me as something I feel drawn too. I have visited prisons as part of my Victim Support work and have spoken to the befrienders, other trusted prisoners who mentor new ones. This has been a really successful programme, reducing depression and suicides.

This is something that I feel genuinely motivated by.

The loneliness will be profound.

The tenuous link to our conditions is that having a career goal definitely helps. Not ready to fold up my apron yet.

Thanks for reawakening something dormant in me!

in reply to SheffieldJane

WOW! ...just WOW! What are the chances? Totally cool... but you need to be trained... Fancy going to Maui in April for Training? I'll go if you go....

doorwayintolight.org/2019-i...

soulmidwives.co.uk/soul-mid...

lwdwtraining.uk/doula-train...

SheffieldJane profile image
SheffieldJane in reply to

I am in Australia for the whole of April otherwise I would. Timothy Leary! I read his book.

The next one, definitely and we’ll be better with any luck. Been to my ex mother in law’s funeral today. It all feels very poignant.

I am sincere about this - it feels like a natural progression for me.

in reply to SheffieldJane

What book.... share with me, please!

I'm sorry about your ex mother in law... I lived my ex MiL.... don't like her son too much, though!

Yes, I'll look at some training courses, as I need a refresher!

SheffieldJane profile image
SheffieldJane in reply to

Tune in Turn on and Drop out. In praise of LSD. But who knows where his journey has taken him? 😇

Yes look at more training courses. After April I am free for the rest of my life. Xx

Yellowbluebell profile image
Yellowbluebell in reply to

As part of my legal career I have spent far too much time in prisons dealing with people who should be in mental health situation not a bloody prison. The prisons have unbelievable bad health care and irrelevant of why people are there they should be entitled to a reasonable level of care. Setting up something for prisoners would be fantastic to see. Hurry up and get well and forge ahead on this fantastic plan. Yellowbluebellxx

in reply to Yellowbluebell

Thank you, I can only imagine, really, but thank you for validating my beliefs... I'm trying! I already have my first volunteer Soul Midwife who will handle the "Sheffield" region of the UK!!!! 👏🏻👏🏻

Yellowbluebell profile image
Yellowbluebell in reply to

I am sure Jane will make a great soul midwife. I dont know if mens prisons are the same as women's as only ever been in one a couple of times but in women's the health care might as well be non existent and the officers can't do anything because it's managed by outside agencies normally. Good luckxx

in reply to Yellowbluebell

I know right! She will be! I have a lot of research to do... presentations to create and present and people to convince, but in the end it will be worth it. If we can sit with just one or two inmates, who otherwise would have died alone, it will have been worth it. ❤️

SheffieldJane profile image
SheffieldJane in reply to

You are exactly what I need! I would be shy about selling the idea and good at the actual thing. These closed environments are very suspicious of outsiders at first. I worked for witness support - supporting witnesses through the whole trial process, including being in court with them when they gave evidence. Very hard battles were fought before my time to get this service accepted. They absolutely depend upon the volunteers now. If you have the strength for this battle, I will be right beside you.

Perhaps we ought to take this PM because it is losing relevance for others.

How is your virus?

I feel beaten up but felt very uplifted during the Catholic funeral service.

in reply to SheffieldJane

Cool! We have a long way to go... we'll talk!!!!

I am so happy you found the service uplifting! That is cool.

Telian profile image
Telian

What a lovely article with beautiful photos of you. You are one special person to be able to do this with such genuine feeling for helping others as a result of your own grief. You will get back to this one day - when you are well enough. Makes me feel emotional just knowing you. X

in reply to Telian

Awe... now you've made me emotional. What a lovely thing to say!!!! Thank you! I WILL get back to it one day and maybe going through these stupid illnesses, depression and setbacks will have made me stronger and better at just "being," and listening. ❤️

Telian profile image
Telian

You will but Just one day at a time for now or you risk continued set backs. See it as something to look forward to. Do your daughters give your support as your husband does? I have to say it takes some strength to do it. Take care xxx

in reply to Telian

Ha! Re: daughters... NO! Hahahahahahaha They are absorbed in their own little lives.

I swear when I am dead and gone and they read my blog , articles like this or talk to my friends at my funeral, they'll be like; "Wait... what? Are you talking about MY mother?" 🤣

Telian profile image
Telian in reply to

So they don't even know! Why am I not surprised....it's the way of the world now....I'm sure they'll be proud though..

in reply to Telian

*laughing* Yeah, I'll be dead and they'll be proud! Cant blame them entirely, as "I created the monsters." 🤷🏻‍♀️

Chrob profile image
Chrob in reply to

Read the other day . Nobody tests your inner gangster more than your daughters smart mouth .

in reply to Chrob

Tru dat.

PMRpro profile image
PMRproAmbassador in reply to Chrob

What is the inner gangster like?????

in reply to PMRpro

Fierce.

Chrob profile image
Chrob in reply to PMRpro

Can be ruthless.

Telian profile image
Telian

We're not blameless though we do cosset them too much - don't you think?

in reply to Telian

For sure!!!!

alvertta profile image
alvertta

Great article.

in reply to alvertta

Awe... thanks for reading!

Koalajane profile image
Koalajane

What a great article and the photos of you are stunning. Well done to you. X

in reply to Koalajane

Awe, thank you KJ. I'm really not sure why they used so many photos, it was weird to look at ... 🙄 . I am pleased with the article though. thank you

Annecath profile image
Annecath

Mamici1 what a great lady you are , so sad for losing your mum and two brothers and helping other people what a courageous think to do, God Bless you get well soon

Ohhhhh, thank you! I need all of God's blessings I can get! Many thanks for reading and kind words!

Cyclegirl54 profile image
Cyclegirl54

What an amazing person you are. xx

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