Monday, 26 November 2012

Each Day As It Comes...

Well it's been over a week since this all started and I'm still here... Talking about things and starting therapy definitely helped. Having good days and bad days but that's only normal so I'm told. So I'm taking everyones advice and just taking each day as it comes, not making arrangements until the day unless it's a hospital appointment and letting myself feel whatever it is I obviously need to be feeling.

Still not back to my positive self but feeling positive enough to know that I'll get there.

I had acupuncture this morning and was the last of the course which I'm happy about as I now have one more clinic to add to the list - hand therapy and occupational therapy to help the pains in my hands and fingers so it's good to be letting go of one clinic before adding another. That means this week I have the Maxillo-facial clinic (jaw), physio, acupuncture and hypnotist. And next week I also have 4 appointments. It was one of the things that was stressing me out but I am dealing with it a bit better now and just taking each day as it comes. Many people don't understand how much hard work goes into managing a chronic illness and I guess part of my frustration is just that. I want people to realise how much I do and how hard I work to be where I am.

Just a short post today to keep you all updated with my progress. I am feeling more positive and I know things will improve. 6 months until my wedding and I know that by then I will be fine!!

Love and light xxx

Tuesday, 20 November 2012

Stay Calm and Carry On? Hmmm

Well here it is... I said I'd be open about absolutely everything. If this was going to be a written documentary about how arthritis affects daily life, I have to be completely honest so this post is going to be hard.

For me, perception is everything. I've always tried to hide what's going on in my body, put on a smile and some make-up and carry on and I think it's worked as even after writing a book about my illness, people are still sending me messages after reading this blog saying 'I can't believe you go through this'. So yes, I think I did a good job hiding it. I always make an effort to look presentable, make sure my house is clean, always have dinner on the table, never let anyone down and try and run a business to the best of my ability.

Well guess what... I can't do it anymore....

I used to get 1 or 2 flare ups a year and then they'd go away leaving me to enjoy a relatively normal life. This one has lasted 2 years and 3 months. I have literally been in pain every day for 2 years and 3 months with not one day of respite. I tried to keep going and keep going. I tried to keep working and not let any of my clients, colleagues or suppliers know what was going on but it is not an option anymore. For the first time ever, I have had to take a break from work because I am just too tired.

I have spent 28 years being positive. I learnt how to meditate 10 years ago and have been doing meditation, affirmations, positive thinking and power of the mind exercises for 10 years. I am too tired to do it now.

It has taken 28 years but I am finally too tired, and I have asked for help. I have always got through my illness with the support of my family and more recently, my fiancee too. They are really amazing, as are a few very good friends whom I can count on one hand. I could not get through some days without them - physically and emotionally. But now I've had to take one step further and look outside of my immediate support network for help. It wasn't my idea initially, everyone had told me I should get help - but I have always got by by being strong, being a perfectionist and being in control. But the lack of control I have in my own life has led me to feeling like this.

The pain got too overwhelming, the lack of control I have over my life and my body got to overpowering, and the tiredness became unbearable, and I started having panic attacks and fainting. Although I know it is nothing to be embarrassed about, I am someone who has just always coped, so is is very difficult to be going through this, and of course to write about it and tell the world when my one coping mechanism has always been to cover it up with a smile. Well I'm tired of putting on a brave face to make everyone else happy. I'm tired, in pain and struggling to cope emotionally but I know I'm not the only one. And I know that by getting the right help I will get through this.

In fact, the psychologist I started seeing yesterday told me he was shocked that after suffering with this for 28 years, I hadn't broken down before.

So there it is; the truth, the whole truth and nothing but the truth - regardless of what colleagues, clients, friends or acquaintances read this, I know that the people who are going through the same thing who read it will not feel alone, and it is more important to help those people than to put on a brave face for people who don't know me and will never be a part of my life.

This is the first time in my life when I've allowed myself to sound anything but positive, and the first time I've been open about it, not wanting to spread negativity into the world. I am positive because I know I've taken the right steps to get better, in all ways, and I know I will. But for the moment I feel that being truthful is what will help ME more, a

nd for now it's about how to help ME.

Love and light to all xxx

Thursday, 15 November 2012

Trying To Stay Positive... Some Help Please??

This week has been a typical week in terms of clinic appointments. Typical in that it is not always straight forward.

As you know from the last post, the weekend wasn't great. By Sunday the swelling went down a little bit and my lovely fiance took me out for lunch and a stroll (in the wheelchair) through Hampstead. Although it was cold, it was a bright, sunny, autumnal day and I love those days so I felt good.

Monday was the first appointment... In a week and a half I have to have a wisdom tooth removed but I have to have a general anaesthetic instead of local as they arthritis in my jaw prevents me opening my mouth wide enough for them to extract the tooth while I am awake. Fine, I'll have an anaesthetic, actually, I'm looking forward to that exhilarating feeling of pure peaceful sleep drawing in on me. Mondays appointment was a pre-operative assessment for this. It wasn't straight forward. The first 'problem' was that I take homeopathy and their new policy is people have to come off any herbal medications before a procedure. Homeopathy isn't herbal but I wasn't going to argue with the nurse-on-a-power-trip. Secondly, she was worried that the fact that my jaw doesn't open enough would be dangerous while having an anaesthetic. She said she'd get the Dr to call me.

He just called. After speaking to the anaesthetist, the nurse, my dentist and the maxilo-facial doctor who originally assessed me, it turns out it is too dangerous so I now have to go back to the original plan of having a local, even though it is going to be excruciating. This has been going on for 7 months, why couldn't they have figured this out earlier than a week and a half away from the procedure?? Frustrating.

That was Monday. Tuesday was spent at The Royal London Hospital for Integrated Medicine. My favourite hospital. It is like being seen privately but on the NHS and I love it. I am patient spokesperson for the hospital and very heavily involved in its campaign to stay on the NHS. I saw my homeopathic rheumatologist, Dr Fisher, who is also clinical director of the hospital first. But trying to get through all the joints that were hurting and swollen was tricky in the short space of time we had. Although I get better treatment there than I do in any other hospital, I felt frustrated that there is never enough time to deal with my entire body, and I feel it is slightly futile to only concentrate on certain joints when homeopathy believes (as do I) in treating the body as a whole. So he gave me the remedy he thought would be best and then I went to my next clinic to have cranio-sacral therapy with the most wonderful, gentle doctor in the world. Although I had to drive back home at rush hour, I was so relaxed from that treatment that I didn't care!

Yesterday I had a 'day off', today I had acupuncture and tomorrow I have physio. I'm literally exhausted. Pain creates chronic fatigue and it just won't go...

The swelling has gone down a bit since Saturday but my jaw, left wrist, left hip, knees and ankles are all in agony so it's a bit difficult to get on with anything.

But I'm meditating every day, eating healthily and staying positive in the hope that this will aid my recovery... any positive thoughts welcome!

Love and light to all x

Saturday, 10 November 2012

No 'Knees Up' For Lauren Tonight....

Well here it is; the truth, the whole truth and nothing but the truth. You wanted a step by step guide of what daily life with arthritis is like, it just so happens that this week has been a particularly bad one in terms of pain so here goes... Jaw was still really painful at the beginning of the week so I was looking forward to acupuncture. I go to my acupuncturist every week. She always asks what is giving me the most trouble. Usually it is my jaw and seeing as the swelling that was in my knees the day before had gone down, I told her to concentrate on the jaw. After experiencing pain in pretty much every joint in the body, it's safe to say that facial pain is the worst. Perhaps because I've had the RA in my legs since I was 2, and only in my upper body since 18, it could be that I'm just more used to the leg pain but according to my doctor, I am right, facial pain is unbearable and most people stop being able to cope when it reaches the face. So the day after the acupuncture I got about 10% respite from the jaw pain, which in arthritis world is huge. When there isn't constant throbbing pulsating through your mouth and entire face all day long, it's a good day! However, the following bastard day my knees decided to swell up. The left one which is always the worst, was worse than the right but both had fluid build up. It is very hard to describe the feeling of having fluid travelling around inside you. I always say the only way to explain it is that it feels like jelly in between your knee caps, and when there is a lot of fluid, you can feel it moving around inside you like a foreign body that shouldn't be there. It's dreadfully uncomfortable. I usually don't worry too much about the knees as unless it is a really awful huge flare up, the swelling usually goes down by itself if I rest enough and do all my exercises, oils, creams, remedies and tinctures. But the next day it got worse and by yesterday - Friday - both knees were as swollen as each other and resembling anything but a knee... Today they are even worse than yesterday. If you've had severe swelling in joints before you'll know how restrictive it is. I can't get down the stairs properly as there is too much swelling to bend the knee enough. It's times like this where I know living in a 3 storey town house was just the best decision! (sense the sarcasm) I had to have a bath not a shower as swelling prevents you from being able to stand for long periods of time, but it is literally impossible to sit yourself down when you can't bend your knees - aside from the fact that my wrists are too swollen to support myself - so I have a special, oh-so-cool Red Cross bath seat for occasions like these. Daniel had to make me breakfast as I can't stand and I am now sat, legs raised, on the couch where I will stay for the remainder of the day. We have a friends engagement party tonight which I will have to miss. Why do I always get a flare up when I have a really nice outfit picked out with a cute pair of heels?? But on a serious note, this is it. This is the life I lead. There are constant flare ups and constant pain. There are always events I have to cancel and even people who know me really well or have known me for a long time get pissed off if I don't come to a birthday or an event of some sort. I really do do my best and I love going out, so if I don't go, you know I'm really not in a good way and I hope that from this, people will be a little bit more understanding of people with RA and why you might think they 'let you down' occasionally. Trust me, it is the last thing you want to do. When you have grown up being told that you can't do all the things you want to do, you want to do them even more. You want to work more, to party more, to go out more and just enjoy the little things in life. So while someone else my enjoy the excuse to be able to stay in, I don't. I look forward to nights out and dressing up because I never know the next time I won't be able to go. Tonight, is that next time..... But I am remaining positive that tomorrow it will be a little better, and the day after even more :)

Monday, 5 November 2012

Ignorance was Bliss....

Before I begin I'd just like to advise that I am aware that long stories should have separate paragraphs, but unfortunately Blogspot won't allow them! And on with what is really important... My last post was my introduction of this new journey I'll be taking. An explanation of what I'll be doing and an invitation to join me! I said that I would be telling you about the experience that led me to this and that is what this post is about... On Friday I went to my GP, after having made an appointment the week before. I wanted to talk to my GP about 'pain management'. See, I've had Arthritis for 26 years, and I've heard the term 'pain management' thrown about around the hospital, but I'd never had it myself and no one (doctors, specialists, physios etc) has ever offered it to me or told me anything about it. I used to get one or two flare ups a year where I'd be in pain, be a bit swollen for about a month and then the homeopathy and other complementary therapies I took, meant that I would come out at the end of that month, pretty much the same as everyone else my age. I never took conventional medications as the side effects cause other health problems and they never agreed with me. My parents agreed while I was still young that they would try and treat me as naturally as possible so that even if I never grew out of the RA (rheumatoid arthritis), at least I wouldn't have other health problems caused by the medications. Just a very few of the many side effects that the chosen RA meds give are: weight loss or gain, immune problems, hair loss, organ damage (especially kidneys and liver), bone damage leading to osteoporosis or osteopenia, hormone problems, growth problems and numerous deficiencies. And if you're like me - which most girls living in the city are - looks will play a big part in your life and the meds also cause moon shaped face, bad skin, deformities and as I said earlier, hair loss and weight problems. Anyway, when I was old enough to realise that what my parents had done for me had literally saved my life, I was so apprecitive to have never taken these meds. Now, at 28 years old, the flare ups have become more frequent. My body as a whole is still healthy, everything works as it should at my age, but the pain and swelling is there most of the time. It doesn't mean I'm going to start taking the meds and ruin everything I've worked so hard for the last 26 years, but I've been looking for other ways to help me cope and get through each day. I can't moan too much about the NHS because they are still funding the Royal London Hospital for Integrated Medicine where I get most of my treatment (homeopathy, cranio-sacral therapy, podiatry), but I still have to pay for other treatments I feel work such as acupuncture, chiropractic, massages and other complementary therapies that I won't begin to try and explain! I don't mind paying for them as I know the NHS is stretched, but I did feel I should be offered what I seem to notice everyone around me is being offered... So I asked my doctor if he could refer me to a mind-focused - not drugs-focused - pain management specialist, telling him that I often hear the girls at physio talking about RA support groups within the hospital, thinking that he would just say OK and refer me.... WRONG! This GP told me in black and white - and see if you can believe this - that because I never take the suggested medications which is the governments chosen pathway for RA sufferers, I am not entitled to the same care as the people who do 'follow the pathway' so they allow me to fall through the cracks in the system. Again, see if you can believe this lunacy, but here is what it comes down to: the government buy all the medications for the NHS from certain pharmaceutical companies. In order to get as much money as possible, the pharmaceutical companies tell the government that they need to give the NHS targets on how many of these meds they must prescribe. Now let's stop for a minute and firstly digest the enormity of this... any institution who sets 'targets' must be thinking about one thing and one thing only - money. Because if they were thinking about the patients well-being (heaven forbid), they would prescribe the patient the medication that was right for them, not the one they need to sell most of. Or not prescribe them anything and come up with a different treatment plan should conventional medicine not be right for them. But let's be honest, they are not thinking about what is best for the patient, they are running like a car show room instead of a hospital and thinking about what is best to make money. So the non-medical money making machine of a business man who runs the hospital is the one telling doctors how to treat their patients! And back in my GP's office, he is just as frustrated about this as I am as he became a Dr to help people. What we both realised however is that the people right at the top are controlling everything; how doctors treat patients, how many of us will get better, who will die and so forth. I was told that when Labour were in power they put no limit on the amount of money that went into the NHS and Conservative have made major cuts. To be be honest, I haven't noticed a difference. It's still as bad as it was then, no better and no worse. And if it got worse our NHS hospitals might as well be make-shift clinics in third world countries... These people running our hospitals should not be simply businessmen. Unless they have had to go through the system themselves, unless they or someone in their family has had a chronic, long term or terminal illness, and unless they have had to fight every step of the way, in an ongoing constant and daily battle to get the right healthcare, they shouldn't be in this job. Is there anyone out there who has any influence over how this absurdity can be tackled? Or am I fighting a losing battle?..... And so it continues....

Saturday, 3 November 2012

Living with Lauren - The Reality...

The title of my blog is simply, Living with Lauren, because I didn't just want to focus on one aspect of my life, I wanted to be able to talk about all aspects as there are so many... Today, I want to start something new. Many people know me, but few know what goes on in my life on a daily basis. This week I had an experience that shook me so much I have decided to write a weekly blog explaining what daily life entails for a twenty eight year old sufferer of Juvenile Rheumatoid Arthritis. This way, perhaps people will get a deeper understanding of what people living with 'invisible' diseases go through every day, even though when you see them they may look and seem completely normal. For those of you who do know me, you will probably say that you would never know I'm in pain. For the last year (let's leave out the 26 years before that since I was diagnosed), I have been in pain constantly, as I have had a never ending flare up in my jaw, hip, knees and ankle. And when I tell people this they can't believe it. If people living with JRA moaned about the fact they were in pain, every time they were in pain, you would never hear the end of it, so we pick our battles I guess you could say. When we moan or say we're in pain, you know it's gotta be pretty bad. If we seem angry, it's because we're frustrated that we're in constant pain and can't shout it from the rooftops all the livelong day, however much on some days we may want nothing more. If it seems as though we are not paying attention or concentrating enough it is because the relentless shooting pains reduce our attention span to a minimum. If we seem to constantly moan about being tired, you may not have realised that it is because with an auto-immune disease, your immune system is constantly fighting itself which drains all energy, as well as the fact that being in pain all the time drains any energy that may be left. If any of you have been pregnant and have that feeling of utter exhaustion that you feel like no one has ever experienced in the history of the world (and I know a few of my pregnant friends have used that expression), this is what most days hold for RA sufferers. And if we seem moody or upset, take time to understand that this is because on top of all these symptoms, we have to cope with all the secondary problems that come with this illness; loss of eyesight, stomach problems, bad circulation which means we are usually always cold, we can't partake in many social activities you may think are normal, every day things and the fact that every day, at least 3 hours of our day are taking up looking after our illnesses. For those sufferers who take conventional medication, there are ALWAYS side effects such as joint damage, low immune system, organ damage, deficiencies etc, and these all need to be treated separately. In short, it's not easy, but we do our best. I certainly do, and after many years of hiding my illness and not telling people about it or talking about it in the slightest, I finally let that embarrassment go after writing my book and meeting some amazing people going through the same thing and I realised it was nothing to be embarrassed about. No one will ever understand what goes on in our daily lives but I've realised that it's ok to try and tell them a little bit about it. And if I'm really in pain, I can say it. Each week I will take you through what happened that week relating to the RA. This is my own kind of 'documentary' on daily life for a person suffering with a chronic, long-term disease - and I expect it won't be much different to any other chronic, long-term diseases, as they all involve a lot of hidden effort. I am going to be completely open about my feelings, my emotional state and my physical progress or lack thereof depending on the week. I will also tell you about each little hospital / therapy / clinic appointment and all the rituals I do each day to keep my body as healthy as possible. That sounds boring, you may say... But any fly-on-the-wall documentary is the same. It is not exaggerated or scripted, it's not over the top and overflowing with information. It is there to show the truth, and that, in my eyes is more fascinating and interesting than the 'big' stories. After all, you've all watched Big Brother at some point haven't you?? My next blog post will be about the experience that has led me to begin these weekly blog posts and I hope you will all enjoy (for lack of a more appropriate word) reading about my journey. And so it begins.....