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Being a Carer – how hard can that be?

Being a carer for husband is exhausting

You know what it’s like to be a carer. Or at least you think you do. It’s just looking after someone else, how hard can that be? … RIGHT.

Well just take a moment to sit and think. Caring is not a choice it’s a lifestyle. You need to have all your wits about you just to make it through the dark days. Not just yours but who you are caring for too. Those moments. NO, every moment affects you.

You think caring sounds easy. You think caring means sitting on your bum having a lovely life. Being paid less then you can ever dream to live on. While society deems you as a lazy person because all you do is care.

Take a little time to step into my shoes. My life is hard. For disabilities and mental health there are days out. Rest bite. Care in the community. Cheap day tickets to places. What do carers get. NOTHING.

I’m not complaining. I love who I care for but their dark days are also my dark days and shock horror I get bad days too. I have thoughts, feelings, dreams, but all these are on stand by because the person I care for needs help every day.

I don’t get time off. I don’t get to follow my dreams. I don’t even get ask how I am coping. What I may need. These all come second place. These are unimportant. Just because I care for someone. Those persons needs become more important then my own.

If you’re a Carer you sign over your life. You live for two people and then you wonder why you are tired all the time. It’s almost impossible to administer self care because bad days are bad days and they need fixing. You’re the carer so it’s now your duty to fix them.

You can’t go out alone because you can’t leave who you care for unattended in case something happens to them and then you’re filled with guilt for not doing your duty.

It’s easy to pass judgement. It’s easy to look like ‘I’ve got this’ and most of the time I have. Most of the time life ticks by nicely because it’s been planned one week in advance.

BUT
Sometimes I cry myself to sleep at night because I feel like I have no freedom. I feel trapped because my dreams have to come second. I feel emotionally drained from propping up those that need me. I feel empty because I have given all the love I can give but there’s still a hand asking for more.

I shy away from activities because I’m too tired to participate. I hide from the world because I find it hard to be true to who I am. The list of TO DO’s keeps on growing. I don’t have time to make friends because I’m too busy making others happy.

Caring can be an isolated life. People forget you. People misunderstand you. People can hurt you with comments. BUT we FIGHT for not just ourselves or those we care for but misunderstood carers everywhere.

If it’s one thing we have in common it’s that we actually CARE. So please be good to your carer. They are there for you but be mindful that they also need time to be themselves.

Thank you for reading. Keep being strong <3 xx

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How being a Carer meant I discovered my creativity

Carer discovered creative crafting online craft supplies shop

My name is Lucy and I was introduced to Conscious Crafties by the amazing Karen Thomas (what a fantastic job she is doing, running this website and shouting out for fellow chronic creatives, I think its fab). I don’t have a chronic illness myself, and my story has developed over the last 4 years after losing my mum and then caring for my dad. Which at times I loved and other times felt the drain, the drain of being his emotional rock and making sure his wellbeing was top of my agenda. This then put pressure on my own wellbeing and family. But I loved him and wouldn’t change anything I helped him with, and like they say, and I’m a big believer of….every cloud has a silver lining! From this difficult time in my life I learnt to find my escape and my inner peace, this came in the form of sewing. I sewed at every spare minute I could find and quickly started making for friends and family and as these requests grew I launched my small business Madebylucy that I run from Facebook and Instagram.

This really took off and I was finding such joy making gorgeous cushions and bunting and a whole host of other handmade goodies for others. Hosting Madebylucy parties in people’s homes and attending craft fairs and school fetes.

Then after losing my dad I felt that I would like to share this passion with others and get more people creating and using craft as an escape, and to meet new people, helping them do something that they thought they couldn’t possibly do. So I set up an evening sewing group, a relaxed informal group that would meet weekly, and from posting on my Facebook page an item that we would be making all people had to do was turn up. This has proven really popular and so I expanded further. I now also run an online sewing and craft supplies shop to help people find affordable, fun and inspirational products to give people a chance to have a go, buy from a person they may know, and from one that has a love for the products and uses them in their own work. (AKA ME!)

My online shop is my real passion that with my sewing group and my desire to grow my sewing classes to encourage more people to have a go. I am looking to hold these in my local community, using community buildings that are easy to get to and that don’t feel too daunting to attend.

birdie buttons
Birdie Buttons

Well that’s my story so far and I am super excited about all my future plans I have, and would equally love for you to visit my Instagram page to see what I’m up to or have a browse in my online shop at Ribbon and Thread maybe you’ll come across something gorgeous you just can’t live without! ?

If you’d like to follow me even more, then I have a monthly newsletter that I ping into people’s inboxes at the end of each month. I include a simple to tutorial to have a go at, and share news from the month and sometimes have offers and special discounts for subscribers.

You can find the link on the Ribbon and Thread website.

Thanks for reading my intro and I have been enjoying reading through the other Blogs on the website, such great work going on and in such a supportive community.

Look forwarding to sharing more with you, Thank for the invite Karen.

Love Lucy xx

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Caring in Chaos

Caring carer caregivers

I’m lucky to be a carer for two amazing people!!! My son and my Mum!

My son was diagnosed with Aspergers/ High functioning Autism, at age 7. We have had a tough old road, now he is 17, done his GCSE’s and is now at college! Safe to say I am one proud Mum!

In May 2015 I became carer for my Mum. She has chronic Arthritis both Rheumatoid and Osteo, which means she needs lots of help. She had to take early retirement and move in with me and my son.

I took up embroidery and cross stitch originally to do something creative.

Its helps take my mind off our crazy merry go round life of hospital appointments, meetings, therapy and general house stuff.

I suffer with Depression and PTSD, due to a previous abusive relationship. So stitching helps and keeps me sane, or not as the case may be 🙂

Autism spectrum top sweatshirt hoodie
Autism spectrum hoodie

For a long time I had thought about running my own business, but just didn’t know what to do. One day Mum saw and advert for a embroidery machine, “you could do that!” she said. So, along came this huge machine which initially I was terrified of! (I had only done hand embroidery up to that point!!). Luckily my computer whizz and all things technical son came to the rescue!

I had had the machine for a month and just looked at it in awe! Half term was all that was needed, by the end of the week he had machine embroidery sussed, taught me and so my learning curve began!

Eventually after several months I braved it and in January of this year (2016) I jumped in. Mum and my boy love the things I make and look forward to seeing the new designs and products, Mum especially as she gets to keep the seconds!

So, here I am, self-employed and loving every minute!

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Caring is a full time job

Being a carer for your partner

I have never written a blog before and I am not all that good at writing about who I am or how I feel. Just lately I have felt that I should give it a go and reach out to people. Caring can be a lonely job. I get sick of people telling me it’s not a REAL job and that I should go to work and stop claiming tax payers money.

I care for my husband who was first diagnosed with Epilepsy 10 years ago. This is how it all started. He had to give up work because his fits got a lot worse. He was a hazard in the work place. It was worsened by the fact that he had an accident and broke his neck. He’s lucky to be alive. I love him so much that I am thankful he is still in the land of the living. His neck is crumbled and the gravel as we call it pushes on nerve endings which caused his fits to get worse.

While going through the system and trying to work out what was the cause, he was diagnosed with Schizophrenia. I have always taken his mood swings as a quirk and neither of us knew he had a mental disability. It opened our eyes to how much can be hidden under the surface.

Giving up work for him caused a great depression. He’s never been the same. With the system treating us the way it has it has caused anxiety and panic attacks so now talking to strangers and going to new places is a challenge for us.

Life can never be the same. So YES, I am just a carer but I don’t get time off. I don’t get holiday pay. I don’t get any support from anywhere and I am left to rely on my own decision making to what is best for us. I don’t have time to be sick. I am needed every minute of the day. I wish I could go to work and work nine to five. I would surly make more money and possibly have a more comfortable life.

I didn’t choose for this to happen. I’m not just sat here on my backside doing nothing all day like people seem to think I am. It’s hard work. Maybe not physically every day but mentally every second. Every time he has a seizure he could die. If you love someone just take a moment to think how that feels. He has at least two a day on a bad month. There is nothing I can do but sit by his side and pray he pulls through.

So no, I don’t have a title, a posh house or children. I gave up all my dreams to be by his side everyday. Love is the foundation of my life. My gift is the days I get to see him smile without pain.

I craft to keep my sanity. I love to create. I love to see people smile and I think LOVE is the most cherished gift we can share with one another. It’s FREE and it changes lives.

So next time someone says they are a carer, take a moment to realise they give up their lives for others happiness. Give them some supportive encouragement. I know we all sure could use it.

Thank you for taking the time to read this. Much love to you all. xx

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From Private Detective to Carer and Artist

Dog pastel portrait, Bob Ashford

PetsPortraits4u : BobzzartAs a young man I trained for 5 years as a Ladies and Gents hairstylist in Leicester. My hobbies were fishing and Martial arts, i studied the Chinese martial art of Gung Fu and attained a black belt 3rd dan. After a few years I found myself working in Germany which I loved and my wife and children all joined me for a few years. It was on one of the journey’s to Germany that I first became aware of my neck problem, suffering terrific muscle spasms in my neck and shoulders, this continued for many years and the pain levels grew, on our return to England I had many hospital appointments, a CT scan and the diagnosis was “hot spots and irregularities in the C spine” (they gave really detailed diagnosis in the 70’s!). My problem was later diagnosed as Spondylosis or Spondylitis i can’t recall which! I was given Tramadol an opiate based pain killer and other pain relief which helped but did not take away all of the pain.

As the years went by the pain became stronger and ever present as it still is today, I recall myself sitting and crying in pain with my wife’s arms around me on many an evening after I finished work. By this time I had started two new companies away from hairdressing, one a Private Detective Agency the other a Security Company and was working 14/16 hours a day, fortunately I must have a strong constitution as I was always able to go to work and work through or in spite of the pain.

Dog Pastel Portrait, PetsPortraits4u
Dog Pastel Portrait
PetsPortraits4u

I spent several thousands of pounds over the years looking for alternative pain relief, having tried all the obvious, I went for energy healing and did find some relief and at about this time I also found a magic masseuse called Suzanne who like many are, was not afraid to go in deep, she was able to break up the tightly knotted muscles in my neck and shoulder after about a year of weekly visits, this allowed me to actually turn my neck a little from side to side after many years of not being able to, over the next few years my pain slowly went down a rung or two thanks to the healing and the marvellous masseuse I had found.
Having had “some relief” from pain for the first time in many many years I though that I could perhaps also help others that suffered with chronic pain and trained in Tera Mai Reiki Seichem becoming a Tera Mai Reiki Seichem Master and also as a Reconnective healing practitioner, through which I was over the years, able to give relief to many other chronic pain sufferers (but not myself!) mainly using Reconnective Healing energies which seemed more effective than Reiki.

 

Cat Pastel Portrait, PetsPortraits4u
Cat Pastel Portrait
PetsPortraits4u

In my retirement and still in pain 24/7 (and still something of a workaholic!) I caught up with an old school friend on friends reunited, she told me that she had MS of which I knew nothing, some years after this her husband passed away and some months later I was reasonably close to North Wales and arranged to meet with my friend from my school days for a meal, we got on well and I began to learn a little about MS. I started to visit her to help out on occasional weekends and at times when she had multiple medical appointments and seeing what she went through to be able to carry out the simplest little task really had me in awe of her single minded determination, the help visits became more regular and now I am her main carer, staying for perhaps a couple of weeks, enabling her to do the things she enjoys and get regular exercise sessions at the gym, then having a few days break before beginning again.

My friend actually classes herself as lucky, because although she has MS she suffers no pain, lots of other difficulties but no pain for which she is very grateful (but how anyone with MS can consider themselves lucky I don’t know) she has lost the use of her left arm and left leg, and struggles to manage even the simplest task, she has been a yoga teacher for over 30 years and still teaches from her wheel chair having adapted many exercises for chair bound people, she has taken over 700 yoga classes at the Neuro Therapy Centre near Chester and does everything she can to enable her to live an ordinary life. My heart often goes out to her as I see her struggle with a task, but I have now learnt the things that I must let her do herself despite how long it takes her or how difficult it is for her, it’s hard to watch sometimes knowing that I can do it for her, but she needs to do it herself, that was the most difficult thing for me to learn as a carer.

Horse Pastel Portrait, PetsPortraits4u
Horse Pastel Portrait
PetsPortraits4u

I find it very rewarding that I am now able to make life an awful lot easier for her, and enable her to live a normal (ish) life. I have free run of the kitchen which is great! I’m even allowed to do the washing up, although she says she occasionally has to re wash items!! It’s a man thing how we just leave an item with a stain or tiny bit of food on that a woman’s radar spots from 100 yards and we can’t see from six inches!

Anyway I have missed a bit out as before re meeting with my friend after many years, my masseuse told me on several occasions to ask my Doctor to test me for Fibromyalgia, when I finally got round to it I was given a positive diagnosis which explains all of the additional pain I have been getting over the last few years and the horrible tiredness and lack of energy, waking up feeling like a soggy sack, trying to remember what was a dream that you thought you had. It’s known as ‘Fibro Fog’ which is really weird sometimes, so caring for my friend although very difficult at times (as she really does not understand what pain is and why I can be so down and useless one day and ok another!) but it keeps me busy and I get an awful lot of satisfaction from being able to make her life easier, despite having lost the use of her left leg and arm she is always happy, cheerful and smiling. I find it amazing the way she copes with her disability and (most days) really enjoy being there for her.

 

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When your glass doesn’t seem “half full”…..smash it up! – READER STORY

Chronic Illness craft glass

23 years ago, I was an at-home mum with a fab toddler, Cameron, so I thought I’d have another baby. Half way through the pregnancy, I was admitted to hospital with some very odd symptoms. I packed knitting, crochet and cross stitch immediately.

A difficult 8 weeks later, when Roseanne was born, I was handed an A4 piece of paper, both sides were covered with a list of her problems.

Rose was then in hospital for nearly a year battling through no swallow reflex, heart failure, meningitis, a stroke etc etc .

During this time, with a hubby working away, toddler Cam and I went to bed around 7.

Fused glass Sheep Baubles for Sheep Bunting
Fused glass Sheep Baubles for Sheep Bunting

I would then wake about midnight. What to do?

So I started crafting-in-bulk! I’d always crafted, but during this time, as the sun rose, I would be found standing still in pjs, surrounded by cards, embroideries, paintings.

I trialled selling some, and reinvested any money into more envelopes and bags.

Once Rose came home, it was quite difficult to go out as she was tube fed 8 times a day, and often on oxygen and needing suction. So every nap I sewed, painted or glued.

Pet Memory Sun Charm
Pet Memory Sun Charm

Our house had a horrid damp cellar, but we tanked it and added heating and set up a nurse call system for Rose and here grew and grew my crafting haven.

As the years went on, many, many more hospital stays led to more manic crafting, both at home and often on the hospital wards too. It kept me sane (debatable). We even chose to have another baby, and Mackenzie was added to the bedlam of the Weir household.

 

About 10 years on, I was just starting to imagine going back to my work as a primary school teacher. Rose was still tube-fed, but overnight, and her medical emergencies were lessening. I was finally coping.

We were driving back from a cinema matinee. The car skidded on spilt diesel as we were going up a motorway slip road. The safety barrier flipped us and we rolled down the embankment. We landed on a path upside down, blowing out all the windows and crushing the car’s structure. The car then carried on sliding, and rolled into a canal .

Cameron dived 3 times and rescued Rose and Mac. Finally got my legs free and helped.

Unfortunately my hubby had been under the water too long and had started to drown.

He was left with brain damage.

Over the next 10 years he battled back, and can now walk and talk, and recently has actually begun driving again. It was an extremely difficult time, but again pj moonlight crafting, waiting room crafting and my now precious dungeon/cellar helped me through.

I had a kiln fitted and when life gets really hard, I go down, smash up glass, and then melt it back together.

About 3 years ago, as hubby improved, Rose also began to come on in leaps and bounds. At 17 she began to be totally orally fed, and at 19, even came out of nappies.

Beryl Weir, Crafts from the dungeon
Beryl Weir
Crafts from the dungeon

I announced out loud on a walk with the dogs, “This is going to be MY year”.

Yeah…

I found the lump 3 weeks later.

So 2 ops and waiting rooms and radiation and severe reactions to radiation.

By gum, I smashed up a lot of glass during that time!

 

I also started to take another passion, weaving, to a higher level, treating myself to bigger and better looms. Even took one into isolation for during my glowing therapy!

So now….Shhhhh….don’t tell the gods, but I’m having a ball!

Rock Pool fused glass coasters
Rock Pool fused glass coasters

My health and their health permitting, I work with glass in the morning, and fibre in the afternoon.

I spend my evenings combining the 2 into kits.

I’m teaching from home and do talks to guilds and crafty groups.

My crafts were only ever meant to cover their costs, so I reinvest any income into more luscious materials or gadgets.

Ain’t life grand!

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Such a Scrounger! 

Don’t get me wrong, I’m incredibly grateful for the benefits system here in the UK. Without it, I honestly don’t know where I’d be. (Yes I do, on the streets.) But what I hate, is the stigma attached.
So here it is. I’m 29 and I claim benefits. I’m probably never going to work again. At the moment my other half is also claiming benefits. Why? So he can look after me. Previous to that he had a well paid, full time, job. Now he’s stuck with my label of ‘Scrounger’.
Firstly, I’d like to address my husband (and anyone else on carers allowance). I’d like you to adjust your thinking a little here. If my husband wore a uniform and went round to a lovely old dears house five times a week, bringing home a nice little wage, he’d be employed. But because he lives with the person he’s looking after and gets paid by the government he’s a Scrounger? I think not. My partner works just as hard, if not harder, than anyone else. He is here for me 24/7 and the pay is a pittance. Honestly, life would be easier for him if he worked. He’s given up a career he loved, and most of his social life, to do this. So think about that when you assume someone who is a carer has the easy option.
Secondly, there’s me. I don’t work. I can’t work, and I’m not going to apologise for it. Why? Because it’s not my fault. It’s taken me a good few years to appreciate that I cannot control my health. I used to work. I had to leave when it was getting to the point I was collapsing in the workplace and unable to function at home. Even after that point I continued to try. I would volunteer at my daughters school so at least I felt I was giving something back. But one afternoon in school meant the rest of the week in bed. I couldn’t wash or feed myself. I couldn’t look after my child (who incidentally I had before becoming ill, but having a child whilst on benefits is a whole other debate), in order to function I had no choice but to give it up.
So now I don’t work. But, believe you me, it’s no picnic. Yes, I spend many days in bed. But it’s because I’m in incredible pain and sapped of every bit of my energy. Some days I make it out. But even then, with a smile on my face, I’m dizzy and in pain. (Which is best case scenario). Just because I don’t work doesn’t mean I have an easy life. I’d LOVE to work. I went to university. I was supposed to have a career. I wasn’t supposed to be a burden on society. I had a plan!
But the thing is, life happens. Health issues don’t care about your plans. So please, have compassion for those of us in genuine need of benefits. I can guarantee you won’t think worse of us than we have of ourselves. I wouldn’t wish my problems on anyone, but remember, disability can happen to anyone. Even people who think everyone on benefits are scrounging scum.

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