Crash and Burn
20 May 2012 1 Comment
Ah yes another huge gap between blog posts, I’m sorry. I’m sure you will all understand though as most of my readers have chronic illnesses like myself when I say I just haven’t had the extra spoon needed to write these posts on top of everything else I have been doing.
I started Glamsticks up again but it has been a bit of a muddle as we’re still not unpacked properly. I was supposed to have my GlamShack (workshop) built at the end of march when I reopened GlamSticks but with one thing and another it hadn’t even been started and as I had a huge waiting list by then I had to choice but to open up even though everything was still in boxes and difficult to find/access.
This means the house is now a mess, covered in my Glamsticks stuff. We’re all getting a bit fed up as nothing is organised and there is nowhere proper for me to work and I can never find stuff I need and I use up spoons looking for stuff that should be easily accessible but isn’t, it’s in the depths of the garage under several boxes… The GlamShack is in the process of getting built however and I am hopeful it will be completed in a month. Hopeful if not certain.
I’m having to take a few days off from GlamSticks as I have been overdoing it trying to get through the waiting list so people don’t have to keep waiting and it has made me ill. I’ve also somehow done my back in so I’m hobbling bent over like a very old person when I manage to get out of bed. Bad times! arghhh! However, experience has told me this illness is full of ups and downs and hopefully this particular ‘down’ will pass. I was feeling slightly ‘better’ (Better for us spoonies doesn’t mean the same as everyone else, it’s relative, it may mean I am not sleeping quite so much in the day for example) since my move to Ireland. The countryside is definitely agreeing with me and I couldn’t love anymore the garden and the birdsong I hear everyday. I am loving visiting the cows in the field at the bottom of the garden and I am tramping about in wellies and unbrushed hair and loving it lol. I am going to be rescuing some battery hens in a month or two so preparing for that. I can’t wait. I do believe it is all going to be for the good.
I think this latest crash is because I was trying to do too much with a combination of glamsticks and my animal rights work. Also as I was feeling a little ‘better’ about two months ago I went and attempted a game of bowls. I think that was the real killer. I had a complete crash after that and I am still not recovered all those weeks later. That is the problem with feeling a ‘bit better’, athough common sense tells you to take it easy you feel relatively good and so want to do the things normal people do and what you’ve been missing out on and you completely blow it. Feeling ‘better’ puts you in a good mood and you say ‘I know, let’s go for a drink and a meal’ you know, you want to spend some quality time with your husband and go out with him (It’s what you used to do all the time before you got ill and you feel guilty he has to stay in with you pretty much all the time these days) so you say ‘let’s go out’. Hubby says ‘are you sure, you know you get tired’. You get annoyed because yes, you know you get tired but you don’t like getting bloody reminded of it all the time so you snap ‘i’ll be ok’, you go out, have a nice time, until you get tired at 8pm and completely crash for the next few weeks….
It’s so hard not to over do it when you feel ‘good’ remember that relative term? I need to learn from this most recent crash. I was enjoying feeling ‘better’ and I’m not enjoying feeling like this.
This new life in Northern Ireland could literally be a new life for me so I’d better start, for the first time in my life, learning to be sensible. Hmm… how does one do that after 44 years of not being sensible? ha!
I will leave you with a couple of pics of flowers from my garden xx and my new blog about the cows at the bottom of the garden. Ophelia and Friends
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Emerald Lure
28 Feb 2012 Leave a Comment
Gosh I don’t really know where to start, it’s been so long since my last blog post and so much has happened….. I’m thinking just a brief summary and then maybe I can refer to events in other posts, I don’t think I could manage to write about everything!!
Most importantly, I no longer live in Essex, I live in Northern Ireland in a lovely house (bungalow which helps mobility problems) and with a massive garden which I am hoping to enjoy in the summer. There were several reasons for the move but one of the deciding factors was the hope that living in the countryside with a big garden might help improve my health as it was just getting worse and worse in Essex.
I have been very ill and I have to admit very depressed with it. I’ve been getting very frustrated with my weight issues and my ever weakening body and ever constant pain. I’ve also been feeling very frustrated at the medical profession and their disinterest in chronic invisible illnesses.
I’ve had to close GlamSticks down as a result of the move and my illness but I am hoping to re open on the 27th March this year (almost this month lol).
As I said, I won’t be able to write much but will hopefully get everyone up to date in the posts to follow. Will just finish by posting this blog post where I am put forward as a vegan role model 
Vegan Role Models by Clare Crossan
What Do Vegans Eat?
28 Feb 2012 Leave a Comment
People often ask me what I eat when they discover I am a vegan. I find the question slightly confusing as there are no problems with food and I enjoy a varied and tasty diet. I’ll post some pics of the food we eat in my house!
Stuffed Butternut Squash
Fruit Bundt Cake
Black eyed pea and tempeh meatballs with pasta and marinara sauce
Biryani
Ham, cheese tomato and spinach pinwheels
Banoffee Pie
The lost and the imagined
30 Oct 2011 2 Comments
The most common time of death apparently is between 2 and 4 am when our bodies natural processes slow down. Irony then that this time is usually the time I am awake and due to the fact my body is already at a lower ebb than usual I am generally feeling more ill or depressed than usual. Great, why can’t I sleep through this time!
I’m feeling very frustrated at the moment. I don’t see many people in my day to day life. My husband is working in Ireland at the moment and I only really see my carer Malcolm otherwise. I don’t think I have seen anyone since I looked after my niece on Monday apart from Malcolm. That’s the norm. Hence, social networking sites such as Facebook are very important to me. I run a vegan group on there and I have a lot of Facebook friends and we support and enquire after one another. Not all of my facebook friends are ill however and I am aware that I must come across as a whinger sometimes. This is where my dilemma lies. Do I stop posting statuses about being ill (after all my illness is what consumes my everyday living at the moment) or do I risk the occasional negative comment about being a whinger? It’s easy to say ‘oh ignore them’ but when you are mostly housebound and you don’t see anyone apart from you carer then little things take on a huge magnitude and can be terribly upsetting. I find my emotions are unusually heightened and I get upset and burst into tears at the slightest thing. So if someone is critical of me it hurts me terribly. This illness makes me selfish and I can only think how I am affected. It can make me resentful. My husband went to an office party and was dancing the night away. When I saw his facebook status I was glad he’d had a nice time but it also made me cry because I remembered when I used to go dancing with him and the fun we used to have and at that moment I really really wanted to dance more than anything in the world. Goodness, I’m a wreck, I’m crying my eyes out here at the keyboard just writing this. Because I am upset I end up writing little comments such as ‘I wish I could dance’ and I know then that makes him feel bad. I don’t mean to but I am consumed by grief for the life I’ve lost and just feeling overwhelming depression because I feel so bloody ill.
Illness makes you so lonely. Even if you have people around you, those hours when your body is low in the morning, it is just you and your illness for company and whatever is going through your mind. Some people like their own company, I don’t. It gives me time to think, I don’t want to think, therein madness lies….
I apologise if I go on, I have no on else to talk to in these early hours when I usually write my blog posts. I just feel lost and lonely in a world that doesn’t understand. My mum whom I miss terribly was a poet and she wrote a poem once whose final two lines I always loved:
“Is it an illusion or does the horizon keep
The lost and the imagined while the world sleeps”
I feel like one of the lost.
Tryin’ to explain
29 Oct 2011 3 Comments
Just trying to put into words what it’s like on a day by day basis living with M.E.
I know I go on about it sometimes on Facbook ‘oh having a bad day today’, ‘I feel ill’ etc but if I am doing that then I am having a particularly bad day. Most people when they have flu talk about it on Facebook, imagine having flu every day for the last eight years, that’s what M.E. is like and sometimes it is far worse. On a day to day basis I am completely exhausted. I have sleep disorders so I never sleep throughout the night. I consider 3 hours semi interrruped sleep ‘good’. I am never refreshed after a night in bed. This of course adds to the crushing exhaustion I feel every day. It makes me more or less housebound. Oh yes, I do go out sometimes but I pay for it. When I go to town sometimes for a little shopping (in my wheelchair with my carer because of course I am too ill to walk) I can usually manage about 90 minutes out and then I have to come home. I fall asleep in the car and then go to sleep for a couple of hours when I get home. So I have to consider, if I go out, do I want to spend the rest of the day sleeping? I do have GlamSticks to do. Doing something that involves being out all day will set me back for at least a week and will bring on a secondary infection such as cystitis or shingles or I could get IBS. I’ve got shingles at the moment and I’ve been in a lot of extra pain as a consequence. I also have IBS at the moment.
Just sitting down isn’t easy either. Sitting in the same position for half an hour or longer causes muscle stiffness and makes it very painful to get up and walk a few steps. I try to get up and walk a few steps but then need to sit down again because it hurts to be standing up. It’s difficult to describe the feeling but you get this spreading feeling of weakness and pain creeping up your body and your head starts to really hurt and you really need to sit down RIGHT NOW.
Of course because of the lack of movement I have put on a lot of weight which has made me uncomfortable and destroyed my self confidence. I hardly get dressed. A combination of not liking the way I look and the effort being too much. It seriously tires me out getting dressed. Then there is the asking people to do things problem. Sometimes you ask someone to get something from upstairs for you and you forget one of the items and you need it as much as the other items but you don’t like to ask the person to go upstairs again so you are left frustrated because you can’t do the thing you want to do. Or the person who is doing stuff for you gets a little fed up of running around after you and you get upset because you are humiliated at asking someone to do something and they are annoyed. I cry every day over things like this. Humiliation, pain, exhustion and frustration and sheer sheer bleakness.
And you start losing your mind, literally. The cognitive functionality of a person with severe M.E. (like me) has been compared to people with moderate alzheimers. I am ashamed of my constant typo’s, bad memory, relative slowness at picking things up, inability to read books anymore. Someone recently who was annoyed with me said rather bitchily ‘and you don’t understand half of what I say’. I did understand what she was saying but it was taking me a little longer to get there. You see this is where people with M.E. suffer. Although many people do sympathise etc, after so long they stop asking after you are and get used to it. We are not used to it though, the pain is still real every day, the exhaustion is still the same, it’s till like getting flu for the first time every day. It is insensitive remarks like that person said, or remarks like ‘oh you’re always going on about being ill’ which show how little M.E. is still understood by the world. Would you make a dig at the intelligence of someone who had alzheimers? No of course not, then why do it with someone with M.E. The majority of people with alzheimers are intelligent high achievers, it’s the same with people with M.E. I was a scholarship student at university and have always been confident of my intelligence so losing some of my abilities now is a very difficult cross to bear and harder than some of the others. I’m not expecting bucketloads of sympathy, just some understanding and compassion please for me and the many many others with invisible illnesses. We get ignored enough by the medical profession without enduring contempt from those around us.
The Secret
19 Oct 2011 1 Comment
I’ve had a lot of media exposure with GlamSticks and not an insignificant amount of success culminating in winning Disabled Motoring UK’s Mobility Product of the Year. It’s been great and I have been grateful for it all and I’ve had a few comments recently wondering how I’ve managed to get this media coverage almost as if I have some secret. Well I do have a secret. It is The Secret and sheer bloody hard work, effort and initiative.
I watched The Secret a few years ago when I was feeling very down about being ill. It’s basically a self help book/film. It’s based on the laws of attraction, positive thoughts attract positive results. I think the film which is what I watched is a little bit naughty though in that it doesn’t explain fully that of course effort is also required. Now I’m not a big ‘laws of attraction’ fan but I did take what I needed from The Secret which was to think positively about my goals and try my best to achieve them and believe I would achieve them. That was step one, having the mindset for success.
Then of course the effort. Okay, I was making GlamSticks. I had no money to advertise, I wasn’t well enough to be ‘out there’ in any real sense as a business, going around shops etc asking if they would like to stock GlamSticks. First thing I did was build a website. Well actually my uncle built it for me and I paid him a token amount for doing it. Now of course if anyone thinks having a website is what one needs to have a successful business then they are going to come unstuck. How does anyone know about your website? You need people to visit it and how do you enable that? I went on a free business start up day long course in London a year ago and we all had to say what we had done to promote our business. One lady stood up with a big smile and announced she had just made a website for it. That was it. I remember thinking ‘and…?’
This is where the hard work comes in. If you have no money to advertise then you have to use what is freely available to it’s full extent and then never think ‘job done’! Job is never done.
Of course you need your USP (unique selling point), a good name for your product and a catchy byline. It also helps to have a personal story or reason for the business.
First of all you need customer testimonials. Anyone who bought anything from me in the early days will remember I asked them for testimonails I could use on my website. With home made items especially, or something unique people like to know someone has been there before them and been happy with their purchase. Testimonials make people feel safe. Get those testimonials on the website.
Then it begins. I have used absolutely tons of social networking/bookmarking sites to tell people about GlamSticks. I have about ten lenses on Squidoo all about GlamSticks and even if they are not directly about GlamSticks I make sure the url is in the authors bio. I have ‘articles’ on about 100 article sites and several articles on the top one which gets great google ranking Ezine Articles. Again the url and key words google can pick up on are there. I had to write these articles of course. I’ve bookmarked GlamSticks on sites such as Digg, Stumbleupon, delicious, Tumblr, Twitter, Facebook, Reddit, HubPages, Linkedin, Ecademy and so on. And I’ve kept doing it. I’ve used Flickr and put GlamSticks pictures up and made sure people who saw the pictures would know where to find the GlamSticks. I’ve also used sites such as Fiverr to purchase skills cheaply to make me short videos to advertise GlamSticks which are on Youtube. Some of the videos I did myself. I then posted those videos anywhere that would take them.
Customer service is also important. I’ve tried very hard to be helpful, friendly and give a very personal service. I’ve talked to people about their problems, stayed in touch with them and sent them photographs of their finished GlamSticks. Every completed GlamStick comes with a personalised ribbon tied around it and a small gift bag with some sweets and a GlamSticks item such as a badge or keyring. Everyone appreciates it.
Media coverage comes from asking for it then interest follows that. I contacted all the disability websites I could find on the internet and asked them would they be interested in doing something on GlamSticks. Some of them were and one of them asked his friend at Essex Radio if they would like to do an interview with me which they did. That of course got more traffic to my website. Of course you can’t leave it there. You can’t keep pestering the same people but you do try to stay on friendly terms with them in case they want to do something again. You try the local newspapers and give them an angle they might be interested in. I found emailing them was no good, you had to call. You have to spend some time finding the phone numbers on the internet and call them. A story about you in the local press equals some expensive advertising. They won’t come to you until later when there is interest, you have to go to them. If at first you don’t succeed…. you keep trying. Persistence pays off.
Be generous. By donating to charity or helping people out, they are grateful and are likely to tell people about you on forums, social networking sites etc. I’ve done a lot of work for free. It’s actually very rewarding.
Get people to talk about your site on forums if you can. You’re not usually allowed to advertise your own business on forums but there are ways of getting around that sometimes if you’re a bit clever…
Then you buy the writers handbook and write a personal letter to every publication in there who may be interested in doing a story on your product or you. It’s time consuming and you don’t get much back but the one story could be worth thousands in advertising.
If it’s practical, every single time you leave the house you take your product out with you in the hope someone notices it. You then give them a business card.
I could go on but do you get the gist? There is no real secret, it’s just bloody hard work, persistence, a lot of front and initiative. No one told me to do any of the above, I just worked it out for myself. And it worked. I can’t even begin to count the hours I have spent promoting GlamSticks on the internet in one way or another. It didn’t happen by magic. I worked very very hard. And I did it because life with my illness was unbearable and I needed something to take the pain and unhappiness away. It wasn’t going to be given to me. Nothing is. GlamSticks is everything I have put into it. Nothing more, nothing less.
Quick Hello!
29 Sep 2011 Leave a Comment
Well here I am after such a long absence. You know how it is, the longer you leave it the harder it is to come back because so much has happened!
I’m not entirely sure where I left off but I don’t think I had told anyone I am moving to Northern Ireland just as soon as we sell the house. It’s all to do with Richard’s job. It was a big decision for us to take but we looked at all the pros and cons and the pros included a bigger house with a much bigger garden in the countryside in a lovely area of Ireland. Nothing seems to be working with my health so we are hoping a better quality of life might help. Unfortunately at the moment though Richard is already out there living in digs as he had to start work and we hadn’t managed to sell the house. Malcolm is taking care of me but I am missing Richard dreadfully.
I have got lot’s to tell everyone but I need to sit down and have a look at what I have and haven’t said…. I’ll be back x
Food glorious food
03 Jul 2011 Leave a Comment
Hello there
Well good news on the tests front so far. I went to see the gynaecologist and after a scan and examination she is certain there is no cancer. I have to go in for a general and a biopsy on Friday but I am feeling very relieved. I don’t think her news had much effect on me when she told me, nor the rest of that evening, Richard said I seemed strangely detached (I think that is the way I deal with things these days and is a classic symptom of PTSD). I was in a good mood when I woke up though and decided to have a cooking frenzy. I took too much on though, was too ambitious and collapsed about 6pm and slept till 6am the next morning.
It was yummy food though, let me tell you about it. I made vegan scones with a home made strawberry compote and cream. I made a pear and apple cake from this recipe . A Mejadra from this recipe which was completely moreish and Roasted garlic soup with rouille and french bread an Sweet potato rosti with braised vegetables in a sweet sherry sauce (except I subsituted the sherry). The last two I got from some books I have here and I don’t really want to type the recipes out sorry!! We still have food left over which is lucky as I am far too worn out to cook today!
I’m not sure I mentioned, I keep forgetting but I am giving a talk entitled ‘GlamSticks not grey sticks..’ at Colchester Town Hall at 2pm on Tuesday (this Tuesday). It would be great to see you if you can make it xx
Coddling Up
30 Jun 2011 1 Comment
Hi there
I spent yesterday in a panic and had a very sleepless night worrying about the cancer scare with the result that I called the surgery this morning and insisted on being seen today. I’m glad I did as the initial examination was good with nothing untoward being found. Doc was careful to point out though that although this was good news I still had to see a gynaecologist as he could only give me a basic examination. Well I don’t mess around, I have the appointment for 6.30pm tomorrow taking full advantage of the private medical insurance Richard has with his job. I do feel a lot happier though.
I have to say, this should be a lesson to us all with chronic illnesses. When I first became ill I was under the care of Dr DG Smith (the best specialist I have ever had) and he told me the story of a man who had been diagnosed with ME. Anyhow, this man’s health got steadily worse and worse and worried about it he consulted his GP who kept attributing it to his ME. Upshot is, he got a very late diagnosis of bowel cancer and died.
I am not trying to blame my GP here, I think the fault lies more with me for attributing my symptoms to ME/Fibro and also my doctors surgery is so busy they most of the time insist that you only talk about one problem at a time when you go there. I always had more pressing problems I wanted to talk about so the abnormal bleeding always went on the back burner.
This time I wanted to mention it as other people had told me it was important but I also had other things I wanted to mention so when I got there I was blurting everything out as quickly as I could so I couldn’t be told ‘enough, one thing only’! I have a new doctor at the surgery though and he is very nice, I feel more confident about going there now.
Okay, my point is, if you have symptoms that are new or worse or are worrying you, don’t put them down to your chronic illness, insist the doctor gives you tests and examines you. It could be something else and you could leave it too late. I still don’t know how this story is going to end with me but I could have had a lucky escape, we shall see.
On other news, I still haven’t had any diet coke but the headache is still there but then again I didn’t have much sleep last night. Not too brilliant on the diet today, I did succumb to some chocolate but they have been trying times….
I’m cooking some comfort food tonight Dublin Coddle with Irish vegan sausages and Cornbread Nothing unhealthy but comforting, just the thing to eat whilst wearing my new soft cuddly nightshirts I bought yesterday in a fit of therapeutic retail therapy J
One last thing, Amazon keep saying Richards book is out of stock but it isn’t. I think it is something to do with print on demand. It is being sent out to the people who are ordering it, so get yours today! J
Interesting Times
29 Jun 2011 3 Comments
May you live in interesting times. An old Chinese curse. I know it doesn’t sound like a curse but I guess ‘interesting’ means things aren’t calm and peaceful. I wish I didn’t live in interesting times…
Today has been an ‘interesting’ day. I woke up with s splitting headache no doubt down to the diet coke withdrawal. Not a good start, then I had an appointment with the doctor. I haven’t been in ages I haven’t seen the point to be honest but I thought it was time to go to chase up a couple of things. While I was there I mentioned some other stuff and the doctor’s unconcerned face immediately changed and he said ‘this is very important and you must be tested and seen by a gynaeocologist urgently’…. Suspected ovarian cancer…
Well I have private health insurance through Richard’s job so as soon as I can get a referral from the doc (I didn’t think when I was there so had to call back but he had gone home) I shall get the tests done as quickly as possible.
I’m not sure I am going to be up to writing my blog for a little while, we shall see. I’ll keep you updated.
Edit: Just got off the phone from my doc, it is uterine cancer he is looking for with a possibility of ovarian.
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