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
As 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.
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.
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.
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.
Hi my name is Roz, and I’m a 32 year old married mother of 3 girls, and also a coloured pencil artist.
I’ve always had a love of arts and crafts. From a young age I would doodle and draw, paint, make things and generally make a mess. As I got older I decided that I wanted to study art, and took an extra GCSE in art, so I studied both 3D and 2D art. I loved the variety of materials that I was able to use, from pencils to paints, and clay to fabric. I got the grades that I needed to study art at A Level and that was when my love of drawing really started. I decided to concentrate on graphite, and that was what I have worked in until recently. I would spend a couple of months drawing from magazines, or photos of animals, improving my techniques as I went along, and then put it all away when life got in the way. When I had a bit of spare time, I would get it out again and improve my techniques a bit more, but never worked on it consistently over the years.
I was also quite active when I was younger and would walk for miles every day, swim, bike ride and generally keep quite fit and healthy. But that all changed when I became pregnant with my eldest daughter.
From early on in the pregnancy I knew that something wasn’t quite right. I knew that I would get aches and pains, but the pain I was getting was a lot worse than I expected, and it continued to get worse from week to week. I was having trouble walking and had unbelievable pain in my pelvis and hips. I mentioned it to my consultant, who told me that it was normal stretching pain and I was making a big deal out of nothing. I was refused physio and told to get on with it, so I went to see a physio privately, who diagnosed me with SPD (Symphysis Pubis Dysfunction, or PGP as its now called).
It continued to get worse throughout the rest of the pregnancy, and it caused complications for the birth (which I don’t need to get into) I also dislocated my coccyx (which is still dislocated 12 years later).
The same thing happened during the second pregnancy, but it was a lot worse and came on a lot quicker. Unfortunately I had the same consultant again, who told me that same thing ‘Its just stretching pain, stop fussing’ only this time it was so bad I couldn’t walk, had to be helped to do everything by my husband and was in such an awful state that I spent a lot of time crying and wishing it was over. This time my physio gave me the news that I had had a Spontaneous Symphisiotomy (where the pelvis basically splits in two) I was given crutches and a support belt and told to rest. I was referred by my physio to a women’s health physio at the hospital who specialised in pelvic problems in pregnant women. She couldn’t believe the state I was in. Again it made for a difficult and painful delivery.
Unfortunately whilst my pelvis was in two parts it twisted in opposite directions, and when it did fuse back together my hips were out of line, it effected my spine, my coccyx and my Sacroilliac and Symphysis Pubis joints.
The third time was better. I was under a different consultant, a woman this time, who had read my notes, knew the condition and got the ball rolling to get me all the help that I needed. I was given physio all the way through, was put on bed rest, was given a support support belt and the physio was there during the delivery to make sure that my pelvis wasn’t flexed any more that was safe to do so.
I was also referred to an orthopedic consultant who I am still under today. I have been diagnosed with Diastasis of the Symphysis Pubis, Scaroiliitis, Dislocated Coccyx, a Prolapsed Disc in my lower spine, my hips are 2″ out of line and I have severe and constant Sciatica. I am under a gastroenterologist who has diagnosed me with IBS too, and have intolerance to wheat, lactose, soya and caffeine.
I am in constant pain to this day with my pelvis and lower back, I have to use crutches most of the time, and have a wheelchair. I have also had to have the house kitted out with home aids to help make my life easier. I am allergic to painkillers so can’t take anything for relief. It gets really hard to cope with it all some days and I do get very down, but I have fight for my girls. I was trying to take my mind off my pain by card making, sewing, and crocheting, but have had to stop all of those due to the pain, lack of mobility and energy and my more recent diagnosis of Fibromyalgia and Raynaud’sDisease.
I noticed a couple of years ago that I was feeling pain more widely through my body, I was also feeling exhausted all the time, couldn’t concentrate on anything for any amount of time, and generally felt unwell. I was also extremely susceptible to the cold too, and got blisters on my hands and feet.
It got to the stage that I couldn’t do any of the crafts that I loved to do. I had hit rock bottom and couldn’t see a way out. I had nothing in my life other than extreme pain. I had to stop driving, which I loved, stop all of my crafts, I couldn’t go out, couldn’t manage around the house by myself, and had to rely on my husband for just about everything. Even my girls had become carers for me, fetching and carrying things for me as I struggled around the house on my crutches. I couldn’t do anything with them as the pain was so severe even the smallest movement brought tears to my eyes. I was on the brink of a breakdown and couldn’t see a way of getting out of it. I knew I had to do something, but didn’t know what I could do when I had so little going in my life.
I went to my doctor and explained how I was feeling, and he immediately diagnosed me with Fibromyalgia and Raynaud’s Disease. He told me that it had been caused by the trauma that I had been through with my pelvic problems and referred me to a Rheumatologist. My Rheumatologist is great. As soon as he saw me during my initial appointment he officially diagnosed me and we started on a medication plan. Its taken a lot of work and a lot of tweaking my medications to find some that I’m not allergic too, but I’m now on two different medications that do seem to be helping my symptoms. I’m also getting regular steroid injections which help too.
Don’t get me wrong. I am still in a lot of pain on a daily basis, and there are still days that I cant get out of bed, but they don’t come as often now.
I’ve also started up my love of drawing again. I decided that seeing as there are so many things that I can’t do, I need to find something I can do, and I have all the materials that I need right here in the house to start drawing again. I have also branched out into coloured pencil work in the last 11 months, and am having a fantastic time using them. I do have bad days when I don’t feel up to drawing, but it takes my mind off how I’m feeling and I brightens my spirit when I do feel up to it. I have had to adapt how I sit to draw, and have to have a lot of breaks, as sitting in one position causes a lot of pain, but I work in stages, and don’t mind if a drawing takes me weeks to complete.
If it hadn’t of been for the support that I have received from my amazing husband and children over the last 12 years I don’t know how I would have coped. They have been there, and continue to be there for me, day in and day out and I am so grateful for that.
I will have to deal with my conditions for the rest of my life and my pelvis and hip problems will get worse in years to come, but for now I am enjoying being able to draw again, and getting a bit of my life back.
Hi, I’m Chloë and I am 18 years old.
Here’s my story..
At the age of 16, I started with agonising pain in my ear which completely stopped me in my tracks. I visited the doctors constantly to try and find the cause of my pain but they had no answers to give. Months and months past and several more doctors appointments were made but no one seemed to understand the pain I was in and because they didn’t understand, they had no idea what was wrong. At first they wanted to treat me for basic things like ear infections etc but I knew 100% that it wasn’t anything like that. The pain was unbelievable, sharp electric shocks that shot through my face and ear leaving me in utter agony. I used to tell the doctors that it felt like “the pain was in my brain.” Luckily, I have a very supportive family so they pushed and pushed at the doctors to get me referred because I couldn’t live this way.. especially with no answers.
I was referred to ENT who did hearing tests, pressure tests and other basic tests of my inner ear, middle ear etc but nothing was found. Since they didn’t find any problem, they referred me to maxioral facial who did X-rays and scans but once again, no problem showed. After this, I was sort of pushed away by the doctors because nothing was showing and in their eyes, they had tried all they could. A year and more went by and the pain calmed down. I didn’t forget about it but I put it behind me till I had finished college and got the grades I worked hard for. A couple of months after college the pain was back with a vegencance. This time the pain was 100 times worse. Like before, the pain started with electric shock like pain, suddenly starting in my ear but this time it didn’t last for seconds, it lasted for hours, even days. On the 7th of September I handed my sick note in at work as the pain stopped me being able to go. My family couldn’t stand watching me in pain and having no answers as to what was wrong, all we did was panic. After more maxioral facical visits, they decided they wanted to send me to a Neurologist. Months and months went by were no appointment came through so my family decided to pay so we could go private and get seen as quick as possible.
My Illness is Real!
An appointment came through and it was the day to see the Neurologist. The neurologist diagnosed me with Glossopharyngeal Neuralgia, wow, there was finally an answer! Glossophraygneal Neuralgia is a rare condition where I have damaged nerves in my brain stem. There can be numerous reasons for this but one of them is that blood vessels in your brain press on the nerves and eventually cause damage. The nerve that is damaged is the one that controls your swallowing and pain can be felt in your tongue, throat, ear and other parts of your face. The pain I feel is mostly in my ear but since being diagnosed, I have felt pain in other places. I have since been put on numerous medications, Carbomazapine and Gabapentin but the side effects have been awful. I’m waiting for an appointment to see the Neurosurgeon for the second time as if the medication doesn’t help the pain.. the last resort is major brain surgery. The pain I feel has since stopped me from going to work as it comes and goes and it so unpredictable. It can be set off by daily things such as eating, brushing my teeth, talking and even cold air on my face. The pain is unbearable at times and can’t be helped by medication so I often take strong Cocodamol to knock me out to sleep when it starts. The pain in my ear is electrifying and burning to the point where I can’t move or talk cause little movement knocks me to the ground. Throat and tongue pain feels like I am swallowing razor blades and sometimes it’s impossible to even swallow my own saliva and I beg for a feeding tube. I’m nearly 19 now and learning my own ways to cope with the pain. I’m still off work as they have kept my position open for me but I am hoping and praying a miracle comes my way very soon! Until that miracle comes my way, I have unconditional support from my family and my boyfriend who keep me going day after day!
Happiness Found In Crafting
My love for crafts started at a very young age whilst watching my mum make her own clothes, curtains, cushion covers and anything she could think of! Whilst being at school and college, in my spare time, rather than going out with friends, I would sit at the dining room table, fill it with my crafts and indulge myself in all the buttons and sparkly things! When I left college and got myself a part time job, my crafts were sort of put aside as the hours I did went up and I was exhausted by the time I got home! (Partly because of my illness.) As I deteriorated and the pain got worse and my sick note was handed in, crafts didn’t even enter my mind and all I did was try and sleep the pain away. I didn’t leave the house as I physically & mentally couldn’t, but at the same time I was sick of the same 4 walls. After seeing the Neurologist and Neurosurgeon and hope was given to me, I knew I needed to find something to keep me going. As I am still off work, I needed to occupy myself on the good days I had rather than staying in bed. One day, I rooted through my crafts and the happiness I found in those drawers was unbelievable! Since then, I have my own little work station set up, a Facebook page to show and advertise my things and I have even had messages about selling my things in a shop on a commission basis! How exciting! Crafting gives me a reason to get up and do something with my day rather than wasting away in bed because I’m not working. It helps to keep my mind going and plus, the money helps too! Crafting makes me happy and all I want out of my crafts is to make others happy when they buy and receive them. I craft to battle through my illness because it gives me something to aim for and a reason to believe in myself when everything in the world feels like it’s going wrong.
A lifetime ago I was a young and energetic (ish) uni student. I studied Surface Pattern Design and had a summer internship set up with Emma Bridgewater. I was going places. I knew my path. It involved graduating from my course and speeding off on my exciting roller coaster of a career. I’d continue to study. I’d travel. I’d make good money and fulfil my dreams.
But life had other plans. My health problems were already there. Though undiagnosed and less severe than today they were already dragging me down. Like lead weights tied to my heels they slowed my progress. Put me forever behind the pack in the race to qualify. But I was determined. I could do this! I would work extra through the summer and take my third year part time. Unfortunately my tutor did not agree. My tutor who also happened to be head of the faculty.
Because I only had a crohns diagnosis she didn’t see how all my other complaints fitted with that. Though I had mountains of doctors notes she felt I had just fobbed off uni. Though, with my allowed extra time, I was on track to pass the year she felt I hadn’t had enough taught time. Her recommendation was repeating the second year and doing the third year part time. I didn’t have enough funding for that. I told her so. I told her I’d have to leave. She stood by her recommendation.
It was then that my life altered. It was the that everything I’d hoped and dreamed of since being tiny crumbled to dust. This was the first major blow dealt to me by my health. The first of many. But this was possibly the one that broke me the most. Not only because it crushed my dreams. Also because my self esteem was shattered. Surely if I had any talent at all my tutor would have fought to keep me on the course? Supported me, as I’d seen her do other students. Not cast me out like last weeks rubbish.
That was almost ten years ago. At the time I believed I picked myself up and carried on, unfazed. But that’s not true. My self belief had taken a huge knock. From that day forward I stopped drawing. I didn’t paint. My sewing machine lay idle and was eventually gotten rid of. Looking back through my social media accounts there’s been many times I’ve sworn I’ll get back into my drawing. My art. But I never did. I remained broken.
Then I started this blog. The first creative thing I’d done in such a long time. Even though I wasn’t writing for anyone in particular it still terrified me. But I ploughed on. A few people seemed to enjoy it, and a friend asked me to share it on her site. (https://www.consciouscrafties.com/) Conscious Crafties is a selling platform for disabled people and their carers. It gives them an outlet for their creativity and helps them to build up their confidence and self worth. Not only did I join the site. I also joined the private group for the Crafties. Being a blogger for the site meant they kindly let me in.
I have to say that being around such a creative group of people has been incredibly therapeutic for me. Their makes are beautiful and inspiring. So inspiring that a few weeks ago I picked up a sketchbook that I’d been given two years before. For the first time in such a long time I sat and I drew. And I enjoyed it! I felt relaxed and at peace. Since then I’ve been to an art master class and enrolled in a life drawing class. Only once a month. But it’s something to look forward to. I’ve drawn more and more and even took some tentative steps into crafting.
I will never be the high flying designer is hoped to be. But thanks to the creative environment I happened upon in Conscious Crafties I’m now starting to enjoy art again. I’m starting to heal.
Here’s a few of my pieces I’ve done and a beautiful key ring which is one of the many items which can be found on Conscious Crafties.
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