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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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I decided on the name Windows to the Soul because eyes are not only the windows of our souls, showing the emotions, attitudes and thoughts, they see the world around them.
For those of you who are new.... My name is Helly.. aka Tigg. I'm 35yrs old and was diagnosed with juvenile rheumatoid arthritis when I was 3. This went into remission when I was 13 thanks to a combination of steroid and methotrexate.
Over the years I've managed to keep it fairly quiet with anti-inflammatories and self management. I've had various ops, replacements, fusions and an amazing tendon transfer that actually gave me back fully working thumbs!
In September last year I became quite ill and ended up with a rash that had about 3 different diagnosis'. Eventually it was successfully treated but not before I discovered that my arthritis had come out of remission.
When the rash finally cleared in November I was able to start Hydroxychloroquine...
So onto now........
I met with my new rheumatologist in the run up to Christmas... I was originally based at Taplow before transferring with the team to Wexham Park... Despite moving to Leicester 5yrs ago I stayed with the team at Wexham because I'd grown up with them, knew the surgeons and it was like a little family. Over the past couple of years it has changed... each time I went it was a different locum and the nurses I knew have retired so I decided to take the plunge and transfer to a local hospital.
Meeting him was an absolute pleasure. It was at an evening clinic and nothing was rushed. We talked through my history (LOTS of it!) and discussed a plan of action. Although I wasn't having any major side effects with the hydroxy, it hadn't really kicked in either so I was still struggling, especially with my feet. It felt like I was walking on hot coals the whole time.
He gave me a steroid injection to help see me over Christmas and also suggested I saw a podiatrist for specially made shoes. Have to admit this suggestion filled me with dread! I used to have shoes made for me when I was about 10yrs old which I wore with callipers. Going into my teenage years, I rebelled against this because I just wanted to be like my friends... Hopefully things have changed since then...
The next day I went to see my orthopaedic surgeon about my left foot as I have a hammer toe... As far as I know the only other surgery I've had on that foot was a partial amputation on a toe, filleting on 3 of the toes and a bunion removal from big toe (same one that now has hammer toe). X-Ray showed a different story... seems my big toe was also fused when I had the bunion removal done which now makes surgery more complicated and so I need to see a specialist foot surgeon to discuss options
Christmas was a quiet affair with just husband and I. He's often away with work so it was nice for it to just be the two of us, plus our parrot who is very much like a 2yr old and gets all excited.
New Year was just as cosy although with all the snow and my writing course was postponed until further notice as we lost our tutor plus there had been a family fallout it left me going through a bit of a depressed period. I had no get up & go and my self esteem hit rock bottom 
Joint wise, the steroid injection has given me a boost, feet are't as painful so I've been able to concentrate on doing more exercise which has lifted my mood. In fact I went to my first ever fitness class last night...
Late last week a flyer had been put through the door advertising Zumba classes. I'd never heard of it so intrigued, I googled it.... The Zumba fitness program combines Latin rhythms with easy-to-follow moves.
I emailed the instructor to find out more... her reply was that it's what you make it, you can take the intensity to high impact or keep it low. So long as your moving you're doing it right!
I went along to the first session last night and loved it!! Although have to say with the steroid boost, I ended up dancing like a loon so am paying for it today.
We did basic steps of salsa, mambo, cha-cha, cumbia, merengue, with the occasional hip-hop & line dancing. I found it hard work because I've not been exercising regularly but we had plenty of breaks. With the bouncing around stuff, I just did my own thing and at my own pace. Left there feeling tired but rejuvenated.
Have been feeling it today but I've just done some gentle stretches and taken it easy. I did about 10 mins on the Wii Fit and got some good news... I've lost 2lb so I'm going in the right direction.
I've also rediscovered my passion for cooking so for the last couple of days I've been making soups and a Greek dish called Kleftiko which is lamb, feta & aubergine.
All in all I hope things are on the up... 
Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopeland Read my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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Hellooooooooo!! This last week has not been too bad. I finally managed to recover from my Zumba class and did find that I had a bit more energy than usual.
I do need to step away from the snacks though because it seems I found the 2lb I'd lost, although Aunt Flo turned up for her monthly visit so I'm going to blame her!
Husband went away again on Friday which meant a 4am start for the airport run *groan* It can be hard with him going away especially if I'm having a bad day, not just because he helps me around the house, but I also miss my cuddles
The soups that I made last week have definitely come in handy. The sweet potato one was thick enough that I could just add some grilled chicken and make it a meal.
I'll often tweet about my love of food and it sometimes makes people drool, who will then ask for the recipe. With this in mind I have been putting the recipes on a food blog - there are still some recipes waiting to go up but won't be long.
My joints have been behaving themselves, with the exception of my big toe. The same big toe that I discovered was fused. You know the feeling you get when you stub a toe on a piece of furniture... the throbbing, well it feels like that even when I am sat down. I hope my appointment comes soon.
I still have no news on when the writing course will start back up, but that hasn't stopped me from carrying on. I've been updating my blogs on NHS Choices, and of course here. I'm also continuing with the murder mystery story that I started at college.
One thing I have decided on is the path I want to take later this year.... I have enjoyed supporting people over the years, seeing how just sharing an experience with someone can make them realise they are not alone. I enjoyed teaching the self management courses.. we always had a fantastic group and it was lovely seeing the difference it made over the 6 weeks. With this in mind I decided I wanted to go down the path of health and social care but wasn't sure in what field.
When I met with my new rheumatologist, he asked what I did for work and I explained that I had given up work Christmas 2008 but was looking to train in health & social care. We got onto my own experience both personally and professionally and he explained that there is a definite lack of resources and support for 13-18yr olds, particularly those living with a long term medical condition.
It got me thinking about myself as a teenager, the rebellion against my medication, my splints, wanting to be like all my other friends. I remember not really being given the options of further education, like university. I understand that spending a lot of time in hospital means you don't get the best grades but I still had career aspirations.
I'm not sure if its still like that now but I know its hard enough being a teenager in todays society where body image is key so how would that be with a teenager who has a disability.
So with this in mind I would like to look at supporting young adults. All I need to do now is look at that line of work so I can work towards NVQ level 3 in health and social care, which means making sure arthritis is reasonably controlled and building stamina back up.....
Speaking of stamina, I have another Zumba class tonight which I am looking forward to. Even just walking down to the community centre feels like I am slowly getting my independence back.
Hubby is due back on Wednesday so I'll have another early airport run which means tomorrow will definitely be a day of rest. He has also booked us a nice break away next month which after being ill last holiday will be a godsend! A week at centerparcs with a moonlit spa on the first night...
Can't wait!!  Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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To wish you were someone else is to waste the person you are......
A very true quote but there have been times over the last few weeks when I have wanted to be someone else.... not really anyone in particular although I guess if I'm honest I'd not mind looking like Reese Witherspoon with her cute button nose and cheeky smile. For me I'd just enjoying being someone who could wear some of those gorgeous shoes I keep seeing and drooling over!
Some days my mind has wandered off to thoughts of winning the Euromillions, building my dream house somewhere warm and enjoying lazy days by the pool... the sun warming my joints.... *bliss*
I've come to realise that it doesn't matter whether you have a long term medical condition or not... everyone at some stage in their life wishes they were someone else.... while some people hate their 'thunder thighs', some hate their 'love handles'..... for me, I hate not being able to wear girly shoes.
I've also had bit of a frustration with my Zumba classes. Absolutely love them.... get such a buzz but last week Arthur decided that I was enjoying myself far too much and put a stop to it.... I was frustrated because I have been careful not to overdo things but when I took a step back I realised that maybe with the enjoyment and adrenalin I had not realised my true limits.
Had a chat with my GP end of last week as I wanted to find out more about gym prescriptions. Have heard the word banded around and my local authority is really pushing the whole active thing, trying to get people to exercise more. I wasn't sure if I would be entitled to a gym prescription.
For those of you not sure on it, a gym prescription is where your GP can refer you to a local authority gym (usually at your local leisure centre). You have an assessment and are given an exercise plan to work on. You get 15wks at your gym, normally at off peak times (so its less busy) and you get to work with other people in a similar situation. After 15wks, your GP can extend your referral up to another 15wks if he feels its beneficial. If not then you are usually offered a subsidised gym subscription. Some places even do a pay as you go so you're not tied into a contract.
From what I understood of it, gym prescriptions are usually for people who are considered 'obese' but as my mum always told me.. you don't ask, you don't get.
Seems I am entitled to a gym prescription so my GP has referred me and I am just waiting for an assessment.
Took myself off for a bit of girly shopping on Saturday. Whizzing round on my scooter, I felt I could enjoy shopping, even if I did get a few looks off people as if to question why I was using one... But you know what, I didn't care... I was doing my favourite pastime... clothes shopping. I bought a really nice tunic top and jewellery... I even bought some thick black tights because I would like to start wearing dresses/skirts again. Seem to live in jeans, mainly because I don't like my knees and also I'm more comfy in trainers, which don't tend to look good with dresses...
I went back to Zumba last night and skipped on some of the exercises. This seemed to help but then I got the other end of it.... my muscles were so joyful at being used, they wanted to carry on so I spent last night with my legs doing river dance!
Today I have been taking it easy, mainly because I am so tired. Aunt Flo has also arrived for her monthly visit so I tend to take tramadol to drown out her nagging. On the up side, the slow release pain relief feels like I've had a baileys so I'm currently snuggled up in my recliner chair with my fluffy dressing gown on.
I'm off to see the podiatrist on Friday to discuss 'specialist footwear'.... feel apprehensive although slightly more positive having read on here that designs have changed for the better. I'm thinking of doing a scrap book of shoes ideas but can you honestly do sensible AND glamorous?
Next week I have my first NRAS information day. I'm doing it at my local doctors surgery when they have the flu jab clinic. Hoping to get an array of people plus I am looking to join the action group for the surgeries in the area. They meet each month and are made up of patients who assist in developing services.
I shall let you know how I get on.... in the meantime if anyone would like to be involved in a group in Leicester, check out my thread here
Until next time.....  Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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I went for an appointment with a podiatrist on Friday to discuss footwear. Its been about 20yrs since I last wore orthopaedic shoes and I was quite anxious about the whole thing.
When I was approx 6 I started wearing shoe inserts to help support my ankles. The problem was that I wore shoes out so quickly and my feet were changing with each growth spurt that in the end it was decided that orthopaedic was the way forward. I started wearing the shoes along with a caliper when I was about 8.
I guess as a young child I didn't really think about it because as long as I could run around and play with my friends, I was happy. It was only when I got older that it started affecting my confidence.
Becoming a teenager, its the next chapter in life. You look more to the future, what you want to do when you leave school and its where you shape yourself as an individual, trying to fit in with your peers.
Wearing orthopaedic shoes and calipers, you start to become more aware of your image. I was lucky that I had an understanding school who let me wear trousers and I had some good friends who accepted me for me. In the pit of your stomach though, you always feel different. Girly shopping trips into town were fun but as friends try on shoes to go with their outfits, you yearn to be able to do the same.
When I reached 15yrs old, I decided I wanted to be part of that and stopped wearing the shoes and caliper. It wasn't the most intelligent thing to do but at that age there are so many changes surrounding you that you just want to fit in with everyone else. I started dressing more girly, wearing make-up and my confidence just grew....
I never wore anything overly ridiculous... I think the maximum was a 2 inch heel and I always tried to wear shoes/boots that also supported my ankle...
Since my arthritis came out of remission, my feet have become quite sore so I mentioned it to my rheumatologist. It seems I will need surgery on my big toe (which turns out was fused when I was 12) and I will need specialist footwear again...
Meeting the podiatrist on Friday... I got the feeling he wasn't that impressed with me running 5mins late.... Car parking was its usual nightmare!
We went into the consulting room and he checked over my feet. Confirmed that I'd need some shoes made for me and presented me with a foam box..... pushing my feet into it, I could feel the small balls breaking beneath me as the shape of my foot moulded into the box...
My right foot looked ok... like a footprint in the sand.... beautifully defined from the big toe, curving round to the heel. This foot has good movement in it, helped by the caliper that I wore as a child.
My left foot... well I'd say it looked more like a splodge in the sand.... the arch has completely gone, and there is not defining curve from toe to heel. This is the foot thats causing me problems and is the one that will have the most help with the shoes. Incidently, I didn't have a caliper with this foot....
The shoe will be made to measure so I won't have the usual rubbing, plus there will be an insole to push my foot into a more suitable position.
It was hard to take on board but I knew it was needed..... I had to put my fears aside from my previous shoes.... things would have changed........ surely.....
The podiatrist pushed the catalogue towards me and said I could choose any of the lace ups, and if I preferred velcro straps, these could be put on instead.
Looking down at the pages..... nothing had changed..... In the 19yrs since last wearing them, not a lot has changed. Orthopaedic shoes are still designed with 80yr olds in mind..... and even then, if you're an 80yr old female, you couldn't really wear a skirt or dress.
I remember my Nan, bless her... She always dressed beautifully but even she said how disappointed she was with her orthopaedic shoes... you'd look at her face, soft make up, the twinkling in her eyes... you'd look at her outfit, a floral cotton blouse with colour coordinated skirt, sweeping out from her waist and then you'd see the shoes... big and clumpy. She absolutely hated it, and completely understood how my femininity was snatched away from me....
So as I glanced over the pages, my heart sank... I was desperately trying to think of what I could wear with these shoes, what outfit could possibly go with any of these shoes......
http://www.kenwardorthopaedic.co.uk/womens-orthopaedic-shoes.asp
Resigning myself to the fact that I'd need to be wearing these shoes 90% of the time, they needed to be something that wouldn't be hidden at the back of the wardrobe after the first month.
So in the end I decided to go for these...... trainer style shoes in dark blue with white stripe....
The podiatrist confirmed that I would be contacted when they were half done so I could have a 'dress rehearsal', check they were all ok...
Getting back to my car, I sat and cried.... I felt frumpy..... I felt like I had just given up being a woman.
I can't understand why shoes can't be designed with more variety. There does seem to be companies out there who will do bespoke orthopaedic shoes, but I'm not sure of costs. Just like the NHS overhauled their menus with Loyd Grossman , why can't they overhaul their shoe designs.
Surely they must realise that just having a disability can rob you of your self esteem, but if they were to give you shoes that were just as good on the eye as they were on the disability, people would feel more comfortable wearing them.
As the title says..... give a girl the right shoes and she can conquer the world!
Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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The last month has truly been a hectic one! So while I sit here with my comfort food of meatballs and tuscan beans, I shall attempt to fill you all in....
Shortly after seeing the podiatrist to discuss my orthotic shoes *shiver* I started the countdown to our well needed holiday...
Our last holiday was tainted by the arthritis coming out of remission and me being so poorly so we were definitely looking forward to this one!
I also did my first information day for NRAS at my local surgery. It went well, a bit quiet but it transpired that there was just one doctor in that day so only emergency appointments were available and the flu jab clinic that was being run was for children. This meant that people were literally dashing in and out, but I still had a few enquiries from friends and family of people with RA.
This did, however, lead me to being offered a prime spot in my local shopping centre in May. I've been building relationships with my local carers service and they've signposted me to other organisations. I was also asked to join the local patients participation group... So although my first information day wasn't a stampede, it's opened doors.
Later on that week I received the news that my Dad had collapsed in the early hours and had been taken to hospital. Thankfully he was ok and having further tests but for me, I couldn't settle until I'd seen Dad was ok for myself. I live 120+ miles away from my family so as soon as I could, I started making the journey down South. It would usually take me a little over 2hrs... except I decided to try a different route 'for a change' and ended up taking 5hrs with roadworks, accidents etc... That journey felt like it took a lifetime to make!!
When I arrived, I got a huge hug and tears from Mum and it was then that she filled me on what had happened....
My little brother, who is luckily a night owl, heard a huge bang come from the bathroom... and went to investigate... He found Dad unconscious on the floor, and so shouted for my Mum to call the ambulance...
Dad was drifting in and out of consciousness... Mum and bro said it was the worst night of their life. My Dads face had just dropped, he was slurring and he looked so weak... They thought he was having a stroke and were going to lose him....
Emergency services asked Mum and brother to try and get Dad into a larger area. They managed to get him out into the hall but because he was drifting in and out of consciousness, they couldn't get any further...
The paramedics were there so quick... trying to squeeze through the door with their huge backpacks....
Dad was soon on the oxygen and they were checking his heart rate, etc while putting in a canular... They ruled out heart attack and stroke which was a huge relief.... Eventually when things had settled, they got him into the ambulance with my brother while Mum followed in the car.
At the hospital, they kept him on the heart monitors etc and checked bloods... The diagnosis... Type 2 diabetes.... His blood sugars were twice what they should be.... Once they were happy with his condition and diagnosis, they allowed him home.
Seeing my Dad looking tired and pale made me realise.... he's no longer invincible. Its got to that scary stage in life where you realise that your parents are getting older... Mine are certainly not elderly but having lost one set of my grandparents in their 60's.... the reality is, they're not going to live forever.
I spent the next few days with my family and made sure Mum wasn't fussing too much over Dad. He is on the mend and should be able to control his diabetes through diet but he's going to need to make a few lifestyle changes... including giving up smoking, which he's doing well with so far...
I then made my way back home, ready for our break.....and they say a little bit of what you fancy does you the world of good...... Well our trip to CenterParcs in Sherwood Forest certainly did that!
This was our first time at CenterParcs but we'd heard so many positive reviews we were confident of a well needed break.
Arriving at our woodland lodge in the Maple area, I did my usual thing and checked every nook & cranny like an excited kid on a Christmas morning. Huge windows letting in lots of natural light. The corner sofa beckoning you to snuggle up while logs crackle on the wood burner. The patio doors leading onto your own private area, where you can sit in complete serenity, watching the wildlife.
The first part of the week was totally about the relaxation! Monday night we went to Aqua Sana for a Twilight Spa. Experiencing the different rooms such as the Greek Herbal Bath, Indian Blossom Steam Room, Japanese Salt Steam Bath and the multi sensory showers. We finished off with a swim under the moon and stars in an outdoor heated swimming pool :)
Tuesday was spent relaxing, having coffee in Starbucks and taking in the surrounding areas, walking through the forest before heading back to our lodge for a hot chocolate in front of a crackling fire
Every morning we would have guests over for breakfast... First it started off with the ducks.... They then told the geese... who quite liked the bread but not as much as the crumpets! Word finally got to the swans..... and wow! Such beautiful creatures!
The weather wasn't brilliant... we had snow the first couple of days and then rain but we didn't care.... We were in our little hideaway and it was heaven!
Wednesday was a day for target archery.... This was the first time Phil had ever tried it.... I've done archery for a number of years, although that certainly hasn't improved my aim! It was lots of fun and we got plenty of practice plus we managed to avoid the squirrels :)
After being out in the cold for a while we definitely needed to warm our cockles in the bar..... Phil had a couple of pints but me being me, I had to try the cocktails ;) First it was a gorgeous Mojito (white rum, sugar, lime, soda water and mint leaves), followed by a luschious, creamy Grasshopper (vodka, chocolate & mint liqueur with cream) If you imagine a chocolate mint aero melting in your mouth... this is the drink version! It definitely felt naughty drinking on a 'school day'
Thursday was by far, my favourite day!! Dirt buggy day! Forget boring old asphalt, these were set on a dirt track, and were made even more interesting by the rain.
We made sure to go in old jeans and trainers plus waterproof bike jackets but just in case, the guys also provided us with protective suits... You know the kind that they give to suspects in police dramas, the lovely all in one paper suits ;)
We also had a rather lovely surprise..... Phil and I were the only one ones taking part so we had the buggies and track all to ourselves!
I went round first but ended up losing the buggy on my 3rd lap after my visor steamed up (that'll teach me to breath so heavily hehe)
Phil went round next and I was really taking the mick at how slow he was going.... We could have attached a blade to the back of the buggy and have him plow the field ;) The instructor then explained that I wasn't going that much faster *blush*
We moved onto the next track... a muddier one *grin* Again, I was up first and I decided to go for it!
Keeping my foot down most of the time, I managed to get the buggy sliding sideways round the corners. I lost it a few times and you could hear the screaming and cursing as I went through the ski poles.... My favourite part was after the 2nd turn where a huge puddle lay... I'd get the buggy sliding up to the 2nd corner and then whizzing it through the puddle... the wetter I got, the happier I was....
After Phils turn, I took one look at him and couldn't stop laughing... His face was covered in mud where the visor had lifted.... Taking the paper suits off, we couldn't believe how much mud and water had got in... we were filthy!
The best part was the walk back to our lodge, the looks on peoples faces, wondering what the hell we had been up to!
Now I know why they call them dirt buggies ;)
After we had freshened up, we took the short stroll across to the pancake house. Here we tucked into the New Mexican containing chicken, jalapeno peppers, salami, spring onions, meatballs and cheese, topped with salsa, guacamole and sour cream..... I had mine done as a pancake and Phil had his as an omelette... One word for both *lush!*
For dessert I had a Tropical Paradise pancake which was a banana and pineapple pancake with rum and raisin ice cream, toasted coconut and butterscotch sauce. Phil had Chocolate Heaven.... a chocolate flavoured pancake smothered with vanilla & chocolate ice cream, whipped cream, chocolate sauce and flake
The next day it was time to head home...... Sadly, we packed our bags and said goodbye to our wildlife guests......
The week after I then met the foot surgeon to discuss options with my hammer toe. I originally had foot surgery when I was 12 to shorten my toes and remove a bunion from my big toe. It seems that big toe was also fused at the bottom 2 joints (which I didn't find out until recently)...
The options were that I could stick with the orthotic shoes as these would give me the protection with the toes, and insoles would provide comfortable positioning for the big toe....or....... Have surgery to fuse the remaining joint in the big toe, which would then allow me to wear 'everyday' shoes without the rubbing etc.... Because of the fusion, the shoes would need to be flat, possibly 1 inch heel maximum.
As you all know, I'm not exactly jumping for joy with my orthotic shoes. I still think they are hideous, have no style and just rob you of your femininity. The surgeon totally understood this and even he couldn't understand that after all these years of research, why the NHS can't produce more feminine orthotic shoes.
My decision was to go for the surgery... I will always try and avoid surgery if I can. Its a drastic measure and given my age, its something surgeons will try and avoid if they can. However in this case, there really is no other option.
Finally we get to this week and yesterday was seeing my rheumatologist at the new University hospital in Coventry. I originally saw him in Hinckley but as he's only there occasionally for evening surgery, he asked if I would be happy going to Coventry...
Well, I've heard mixed reviews of this new 'super hospital' so I reserved judgement and went for it. Personally, I loved it. Walking in to the foyer reminds me of when I used to go to Great Ormond Street and St Thomas'...... The entrance is very grand and fresh looking. Signs could be improved on but overall it wasn't a daunting experience. They have volunteer greeters there who will pick up someone looking lost and step in with a warm greeting and reassurance.
The appointment went well. My arthritis is still active but the hydroxychloroquine seems to be doing its job. The next step is to see how the next few months go... If I'm still struggling then we'll look at methotrexate or sulphasalazine. My rheumy doesn't really want to put me onto steroids because I'm trying to lose weight. I've had another steroid jab to boost me and I could continue with them every few months instead of methotrexate/sulphasalazine... will just have to see how things are when I go back in 4 months...
Went for my blood tests, which was the definite downside.... mainly because the waiting time was 2.5 hours! 
So as you can see, I'm taking today easy....
Until next time.........
Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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I really can't believe we are almost in May  Where is this year disappearing to???
Since my last post, things have certainly been busy... Well at least it keeps me out of trouble 
It took a few days for my steroid boost to kick in, accompanied initially by a nightmare headache and nausea. Once that had passed then it was all systems go!
I had my assessment at the gym at the beginning of March which went well and so came the next step, getting into the habit of going to the gym. By this time I had to stop going to Zumba. As much as I loved the adrenalin and buzz, there were times when my joints would throw a strop. Doing something like that is so much fun but there is a danger of enjoying it so much you get carried away.
I go to the gym twice a week and start off with a walk on the treadmill. Then I do some leg and arm work on the weights and believe me its nothing like those body builders lift.. just enough to give my muscles a gentle stretch. After I do some floor work before finishing off with a gentle walk.
There are some days when I can do more than others, I just have to take each one as it comes. I do feel like I am increasing my stamina and I feel like my moods have improved, especially with the better weather.
This has really helped with my depression. I still have a little way to go but the support network around me has been great. With Phil working away so much at the moment, I go to a drop in group at my local MIND. Its run 3 times a week at different locations and on 2 of those days a home cooked meal is available. As you can guess, me being a lover of food, I go to the foodie ones.
The groups are made up of other people who have experienced mental health problems, particularly depression and its a place to grab a coffee and socialise. One of the groups has an art workshop which is very therapeutic, the other has a kareoke session so you can sing your heart out and let your hair down.
It has boosted my confidence and I've found myself planning more things. For those of you who have experienced depression, there are times when you want to shut yourself away from the World and while its good to have some time out, cutting yourself off for too long can make you feel isolated.
After seeing the podiatrist about my orthotic shoes, I'd been counting down the days until I received word that they were ready for 1st fitting. That happened a couple of weeks ago and if I'm honest I was pleasantly surprised. I arrived at the hospital, full of dread, my stomach ready to jump through my mouth. The 1st fitting is usually with half a shoe (minus the heel) and is to check if there are any pressure points. The podiatrist opened the box and it seems he was shocked at what he found....the shoes had been finished which would have been a pain in the ass if they didn't fit.
Seeing them for the first time, I was really taken back... They were tiny!! As the podiatrist explained, with my feet, I've always gone for shoe sizes bigger in order to be comfortable. These shoes were made to measure so I was getting my true size. The style of them also astounded me. My past ones were bulky, like bricks but these were delicate, almost girly. I wouldn't go as far as saying they were real girly shoes, but girly trainers yes and go perfectly with jeans and leggings...
So the last month or so has brought plenty of positives.... There have been a couple of negatives and they'll be ongoing for a little longer but as the saying goes "I have had dreams, and I have had nightmares. I overcame the nightmares because of my dreams" My dream is becoming a University student
Supporting people was my original aspiration when I was at school but that was also at a time when society didn't really think outside the box and so with it being deemed more suitable for my disability, I was steered towards a career in administration. I ended up doing this for about 15 years on & off. It's only been when I've been off work and done volunteer work for charities that I've been able to rekindle my passion
Having the support network around me has meant that I have been also been able to explore the career possibilities. I had a chat with an advisor and as of June, I will be studying towards a degree in health & social care...
I'll be doing this through Open University as the first 2 courses are not residential which is ideal for when I have surgery later on this year. It also gives me more flexibility.
Feelings are a mixture of excitement, nerves and anticipation. This is a definite first for me, especially when I even had to push to go on to further education. I had some great feedback from friends who have done OU and they have shared plenty of tips.
Shall keep you all posted.... Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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You may remember that I enrolled at Open University... Well I've since had all my materials through for this course (Y178 Understanding Health) so have been reading up on assignments etc and the start date is now upon me *eek!* Got to talk to my tutor for the first time tonight and she sounds lovely so has definitely put me at ease. Starting tutorials next week :) I've joined a study group on Facebook and its been funny sharing the excitement and nerves with everyone.
I've also been involved in organising a Mens Health morning through a local patients participation group called CASAG (Castle Mead and Stoke Golding Action Group)... We work as a liaison between staff and patients, promoting the positive side of health care and wherever possible, encourage people to have an active role in determining their own health and well-being.
From a personal view, mens health isn't something that makes the headlines. Most men don't go anywhere near a doctor in their life, and even when they feel quite rough, they soon think it will pass. Its usually partners nagging that makes them go in the end... (although give them man-flu and everything changes! *hehe*)
Thats why we thought this would be a good opportunity to have an open morning and for men to drop in, have their weight and blood pressure checked, see what BMI (body mass index) they are and check for diabetes... We're targeting all age ranges but mainly young fit men (not for the reasons you might think  ) but who perhaps might not have a reason to go to the doctors but need to know the symptoms to look out for with prostate or testicular cancer, prostate being the most common cancer among men.... Keeping fingers crossed it all goes well.
I've become a bit of a gym bunny. After getting a GP referral to go, I have now finished my 12wk course and decided to join up on a regular basis. One good thing about it is, it I'm not tied into any contract so when the winter comes and my joints start playing up, I won't be paying for something I'm not using. I can go whenever I want, use the pools and take part in any of the classes, whether it be body combat, pilates or aqua aerobics. Haven't been to any specific classes because although I have the confidence to go to the gym (I go when its quiet) I'm not quite confident enough for a class.
I do feel like I have more stamina and hubby has mentioned that my bum is a little firmer *oooooh matron!* 
Last Thursday saw me heading off to Birmingham to attend the employment workshop with NRAS (National Rheumatoid Arthritis Society). The concept of the workshop is to provide information to people with RA on employment law, their rights and what support is available should their condition starting affecting them. It is very informative, with occupational therapists and employment solicitors giving guidance on their areas retrospectively. I would definitely recommend going if you are able to! I also got to meet up with Jo and Liz again so that was really nice.
My arthritis has been behaving itself... In fact the last steroid injection I had seems to be lasting longer this time although I think the weather has helped. What glorious days we've been having! On the days when I've not been out and about, I've tried to spend some time in the garden, soaking up the rays. If it continues to be this nice then I'll have to do my assignments out in the garden :)
Still no date for my toe fusion although should be any time now... the waiting list was approx 3 months, which brings it to June. They tend to leave it to the last minute to give you a date. Guess if I've not heard by mid June, I'll give the surgeon a call.
Finally moving onto the here and now where today saw me doing my first ever radio show! Yes you read right!
It came about completely out of the blue but I definitely enjoyed it :)
It started off on twitter, supporting Lib Dems through their election campaign. Through this I got to know another supporter, Mathew who also writes for our local paper and hosts a twice-weekly show on local community radio....
Last week he tweeted (twitter talk for messaging) that he was looking for a co-host for his show and asked if anyone was interested. Now the only experience I've had of radio is doing an interview for a charity I used to work for but I thought why not!
For those of you who know me, know I have a husky voice.... for those who don't, think Honor Blackman, Joanna Lumley and Mariella Frostrup. I've been told I have a voice for radio (although some may argue its more a face for radio!) so today was about co-hosting the show with Mathew and seeing how I got on...
Must admit I was so nervous, and think this showed to begin with but once I was more relaxed, and had my cup of tea, I had a fab time :) Certainly didn't feel shy about talking, heck I have more rabbit than sainsburys but I do need to work on the volume of my voice (little me, little voice)
If you fancy having a listen yourself then you can catch Mathew and I on Friday between 12 and 2pm on www.hilltop-radio.com
Well thats it from me for now. I'll keep you posted on how Uni is going etc....
Bye for now!! Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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OMG!! Last time I posted was in May 
Time truly does fly!
I have soooo much to tell you, its hard to know where to start... I guess the beginning is always a safe bet...
Last time I had just done my first radio show which I loved  Since then I have been made a permanent presenter with the station and the name of the show will be changing to the Friday Mix. We still 'air' between 12-2pm and I know some of you have become listeners :)
We're still only available online as with it being a community radio station with limited funding, we don't yet have a FM broadcasting license. Fingers crossed it will be around Sept/Oct time'. For those who would like to listen in, you can do at www.hilltop-radio.com
My uni course is going well. Its taken a while to get into the swing of things, having never done any form of academic study before. For my first assignment, I got 5 out of 8 outcomes. I was really silly and forgot to do the final part of the assignment, which was looking at what I had found difficult and so I was marked down for this. I certainly won't forget it on my next one, thats for sure! For those of you new to my blog, I am currently working towards a degree in Health & Social Care
Over the last couple of years I have suffered from depression, particularly with having surgery, losing my job and the arthritis coming out of remission. I've had a lot of support from my local MIND, and so I am now supporting them, giving advice on fundraising, social networking and helping support other people. Its given me a huge boost confidence wise and I've met a lovely bunch of people.
On the arthritis side, well thats the best part of all! 3 weeks ago, I had my check up with the rheumatologist and it seems that the meds are doing exactly what they say on the box and the arthritis is heading back into remission. My levels have dropped considerably and so now comes the real test... Reducing my meds *fingers crossed*
I'm still working out, but not so much in the gym as my joints got a bit whingy so I'm now doing aqua aerobics twice a week... Definitely lots of fun and as its non-weight bearing, you don't get the joint pain... just the aching muscles lol
Went along to Fort Dunlop couple of weeks back to watch our wonderful Jo abseil down to raise funds for NRAS.... I tell you, that girl is wonder woman!!
We're currently talking about getting a few of us on an abseil, perhaps down the Holiday Inn in Leicester and calling ourself Arthurs Angels (if we raise over £500, who knows, we may even dress as them ;) )
Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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You are an inspiration for all. Keep going x
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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For Laura and Francesca
I mentioned that I had blogged about my first hip replacement when I was 21yrs old so thought I would share..
Bear in mind that this was written in 2003 and while things may have changed surgically, the thoughts, feelings and questions haven't.. I hope it helps those who are going through a similar situation...
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I had a hip replacement in 1997, it was my first ever joint replacement and my hip had gone very quickly. I initially saw the surgeon August 1996 and by January 1997 I virtually had no ball and socket left.
I went into hospital end of March 1997, very nervous, not knowing what to expect. All I had known for the past year was sheer pain and by this time I couldn't walk. My surgeon was very good, showed me what my new hip would look like and if I'm at all honest, I freaked a little. There I was holding this metal hip joint in my hand, thinking this is going inside of me!? I kept worrying that it would feel different, that it wouldn't feel part of me, that people would know I'd had a hip replacement, I thought it would be that noticeable that I may as well walk round with 2 heads attached to my shoulders!
I got into hospital the day before (the op was scheduled for 1st April, ha ha April Fools day! Just my luck) I’d had my x-rays done and my new hip was checked (because of the way my rheumatoid has damaged certain parts of me I had to have my hip custom made) I always find the first day so boring, the day before the op, waiting around for doctors, anaesthetists (even then the anaesthetists don't always come until the morning of the op), physio, occupational therapist, vampires to take blood etc etc. I've now learnt to take lots of magazines, a good book and a Walkman to listen to. I also take food with me, sweets and fruit (I mean after midnight I'm not allowed to eat and that’s the worst part I think lol)
The next morning arrived and I was scheduled for late morning (normally they will tell you where you are on the list, you just have to sweet talk them) They also gave me some very sexy stockings to wear (to prevent clotting, because of the major surgery and the fact you are laying still for a day after, the stockings are a precaution) not the most comfortable of things, especially if you haven't shaved your legs, they can itch like mad!! They can also feel a bit tight but let the nurses know if they feel too tight.
The anaesthetist came round and checked my neck etc (because they tip your head back in theatre they need to check movement is ok) he explained about the pre med (I get very nervous before ops so I tend to have a relaxant) I had a general anaesthetic. I could have opted for the spinal one but I went for general, as I prefer to be out of it, nothing through experience just general preference. He also explained that when you come back you have a morphine pump (this is a very good thing) it is like a drip but it is attached to morphine, you have a button in your hand so that if you feel discomfort after the op, you press this button and it gives you morphine. There is no way you can have too much as it is set to a level and on a time measure as well. So even if you are like me and keep pressing the button (I was completely out of it when I came round and my trigger finger was a bit happy) I certainly couldn't give myself too much
I must admit, when I came back, I was in a bit of discomfort, I tend to have reactions to anaesthetic so I was a bit ill (if you smoke then it is worse, so try not to have a cigarette the night before the op)
The weird thing is, and I was really amazed by this, you have discomfort after the op, yes it is a bit painful but it's a nice pain (if there is such a thing as nice pain) but its hard to describe, after being in pain with the hip, this pain is refreshing as you know the bad hip has gone and the feeling I got was quite emotional, a happy emotion.
You stay in bed for the rest of the day; you are quite out of it anyway so I just caught up on sleep. I had visitors but they couldn't get any sense out of me, mumble jumble was the description they gave.
The next day I felt so refreshed, eager to get going. That’s the thing, after the op, you just want to walk, but also scared to walk. You have this new hip and you are frightened of damaging it, this is natural. The physio came round and after lunch, got me standing with the support of a Zimmer frame. It felt so strange, no pain, but very weak, it did feel new, kind of surreal.
You are still wearing the stockings so make sure you have a decent pair of slippers (no slip on ones, you're in danger of loosing balance) The physio is always there so just take your time moving, dolly steps to begin with, just to get a feel of the new hip.
Remember my fears earlier, about how the hip would feel? Well it did feel different, the pain had gone but it felt part of me, I didn't look any different, you couldn't tell (unless you dropped your trousers to show people your scar)
My scar is about 5-6 inches long, I had stitches in mine, some surgeons use staples. If possible, ask your surgeon if you can have drawstring stitches (this isn't the medical term so he may have a confused look, but if you explain it's the type of stitching where you stitch on the inside and then pull through afterwards, he should know what you mean) it doesn't leave such a mark.
Afterwards, when you have had your stitches removed (normally 10 days) and the wound has healed, rub E45 cream or a cream that contains Lanolin in, massage it in quite firmly, this helps to restore sensation back in, stimulating the nerve endings and also breaks up scar tissue so the scar is not so prominent (my hip scar has virtually disappeared)
It varies on how long you are in hospital for, it is normally 1-2 weeks. You will have an occupational therapist who will show you how to use crutches and how to get up and down stairs if you have them (you only use the Zimmer frame for a few days to get balance back)
Stuff to take into hospital; this is something they don't always tell you about. Trousers that are loose fitting, the scar is very sensitive so don't have anything pressing too tight against it, even shorts or a skirt. You are not allowed to bend the hip above a certain degree (basically your knee should not be higher than the hip as there is risk of dislocation) so make sure you have shoes that are easy to get on, socks can be a bit of a nightmare but you might be able to get hold of a sock aid, these come in very handy. Your occupational therapy dept issues them or you can buy them from Independent Living Centres.
Work hard on the exercises, the muscle wastage is the hardest thing after an op, they need to cut through muscle to get to the hip so your muscles tend to go on strike.
It didn't take long for me to get back to full working order. I did have some damage to my back because my ball and socket had gone so I virtually walked through my back. But I had the op done April 1997 and in October 1997 I was in Greece walking up very steep hills, it was an amazing feeling. However when I had my knee done, it took well over a year before I got full muscle power back, it just depends on the amount of muscle wastage before and how easy it is to get them back.
It is nerve-racking having an op like this but more often or not it is the not knowing what to expect. I have since had a knee replacement and due to have other knee done next month and other hip early next year. I still get nervous, but that’s because I don't like hospitals, the ops I don't mind because I know what I get out of them will enable me to do stuff I wouldn't be able to do normally.
(C) Helen Johnson 2003
Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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