Moving forward

I apologise for not following up on posts, or posting anything very useful! I have only been able to post the little sayings and things that come up on facebook that have spoken to me about how I feel with my conditions. I have been having a tough time of things, the lupus primarily playing up and causing more pain and tiredness. I think also that I had come to a point in which I felt that I was beginning to accept that there is no cure for lupus so it is forever. Combined with a middle age crisis moment this was not a good feeling.
 
When I was first diagnosed I felt at least relieved that I had a diagnosis. Albeit a rather mixed one. Lupus, fibromyalgia and Hughes syndrome. All have a lot of the same symptoms so who knows what is causing what. I then felt the challenge of trying to take the most responsibility for myself health wise that I could and this 'mental' challenge kept me going for quite a while. I lost a significant amount of weight, started regular exercising without excuses, and changed my diet drastically, no wheat/gluten, no dairy, mostly raw, no alcohol, very little refined sugars. Great. But after eighteen months, you realise why people just take the tablets! It is hard hard work to take such responsibility for yourself.

Am I moaning? No. I am only stating fact. I have not given up on the diet or the exercise and yet still the flare ups come. Obviously time for more action, i.e. accepting that drugs are inevitable.


I firstly took myself to some counselling and am going every week at the moment to try and help me regain a positive long term outlook and to deal with those moments, brief or otherwise, where it feels almost impossible to be positive. It is about learning techniques to get through times when the pain is worse and sleep is a distant memory, along with having energy, and feeling 'normal'. Needing to regain the balance which brings me back to the positive person that I am. I believe that the counselling is useful to me at the moment.


I then tried some accupucture. Unfortunately, although I went to someone highly recommended to me, he was also a chiropractor and seemed to do a mixture of everything. Now, as a therapist I am not against combining my knowledge to use all the useful things I know to help a client. But I DO listen to that client and if they are not interested in reiki then I will not use it if they have come for reflexology alone. Unfortunately I was not assertive enough, although I did stress on the second visit that I could not be manipulated as everything is too painful for that and that I only wanted needles. This did not seem to stop him from bouncing on my back! I felt upset and bruised afterwards. My fault partly for not making it clearer, for not speaking my mind, for being too nice, for not wanting to upset another therapist.... whatever. Admittedly it takes nothing to bruise me!


I was also given a steroid injection which I mentioned on the page. This did seem to help with the pain briefly but not long term and the short burst of energy was quickly followed by a horrible collapse. Worth a try but probably not going to be repeated. Low dose steroids have been suggested but the constant battle with my weight goes on and will not be helped by steroids, even though they are deemed the wonder drug in recent decades, they do still have some side affects.


I went to see my consultant recently and have been given another couple of drugs to try. Firstly a maleria drug which apparently helps with the lupus. Infact I believe that most lupus patients are on it, called Plaquenil. Also some Naproxen to help with the inflammation. I have to say that my consultant was patient, willing to listen and very helpful. I felt very lucky to have such a thoughtful and understanding doctor working on my case.


Anyway - onwards and upwards is the answer. Learning to spend my energy like a budget. This is how much I have now what shall I use it for. The house may have to stay a mess, but the crafts will get done!
Good luck everyone. I hope to be posting more positive thoughts in the future. I am sure that this current flare up is coming to an end. The very fact of being able, and feeling like, typing this much, is a sure indication.

We are what we eat - five simple tips

There is a proverb which says "When diet is wrong medicine is of no use. When diet is correct medicine is of no need". I feel that it is worth working constantly on tweaking the diet to find out what is right for you.  

Here are some ways to keep your mood more constant. It is true that we are what we eat and here are five eating habits to keep you feeling cheerful. We all know them but somehow we forget especially when we are feeling down and gloomy (the weather doesn't help).

Eat at regular intervals - eat often, eat light. This will prevent dips in your blood sugar which can negatively affect your mood. It is good to try and plan your meals and snacks and eat up to six times a day (meals and snacks). The better we plan the less likely we are to get to the stage when we feel really hungry.

It is important to limited your refined carbohydrates. Fizzy drinks, biscuits, white flour, sweets - I know it is obvious but sometimes we forget. These foods give you a rush of instant energy which is often what we feel we need - but they burn up quickly and cause a crash and fatigue soon after eating. There are just NOT worth it. It is also worth noting here that caffeine does the same - quick rush, sudden dip. If you can - cut it down or cut it out!

Eat a small amount of protein with every meal and snack. Protein will give you a long lasting energy - feeling alert and productive.

Eat foods rich in Omega 3 fats - these have been proven to lift moods and are recommended to alleviate depression. Oily fish - salmon or sardines, olive oils, flaxseeds and walnuts.
Boost your vitamin B12 and folic acid. These nutrients help the body to produce serotonin which helps to stabilize you mood - shellfish, fortified cereal, oatmeal, wheatgerm and vegetables are some of the many foods rich in these nutrients.

Diet is the biggest way we can help ourselves to keep our energy levels constant which is so vital when energy is limited. Fatigue is one of the first signals that our body sends us to tell us that there is a problem. By giving the body all the correct nutrients it needs to convert food into energy. Achieving constant levels of energy is best done by ridding the body of toxins while at the same time increasing nutrients to optimal levels. This means not putting the body (and the liver) under extra stress by using stimulants like alcohol, caffeine, sugar, smoking.

We already know these facts. I am not telling you anything new. But sometimes we find it hard to break away from habits that 'seem' to help by giving us an instant lift. My suggestion would be to work away at changing one thing at a time. Decide what you would like to change first (perhaps choose your worst habit!!) and draw up a chart with 21 boxes on it - a tick for everyday you achieve your goal. They say it takes 21 days to break a habit or create a new one. I personally have found that for stopping something this is possibly true but for creating a new habit that actually does become a good new habit it does take a bit longer.

Welcome post

Welcome to my new blog.
 
This is for everyone who suffers from fibromyalgia, lupus, chronic fatigue syndrome, M.E. or Hughes Syndrome (Antiphospholipid Syndrome). Or any syndromes with similar symptoms? Please feel free to comment and let me know!

So many of the symptoms are similar, the pain, the total exhaustion, the weakness. There seem to be so many groups and sites which involve people moaning about living with these conditions and I understand that we all need a good moan every now and then, but this is not the place for a moan. Positive Fibromyalgia Life is the title and that is what it will include. How to learn to live with these conditions and what we can do to take responsibility for ourselves and do the most we can to cope in this fast paced modern world.

My name is April. I was diagnosed with Lupus, Fibromyalgia and Hughes Syndrome last year (2011) at the age of 46. But I believe that have been suffering from autoimmune diseases since puberty. When I was 14 I experienced mad crazy rashes, followed by appendicitus, more mad crazy rashes with severe knee joint pain, a blood condition called ITP which means that my platelet count was through the floor and I ended up (after steroids stopped working) having my spleen removed.

Then followed years of one illness after another as my immune system had been turned upside down. Bouts of severe depression, low thyroid for which I have been taking anti depressants and thyroxine for fifteen years. My tonsils were the next  to go!

Learning reflexology and having regular treatments helped to build me up slowly for a few years but in 2011 I was suddenly hit by sheer exhaustion, arm pain, liver pain and a mish mash of other crazy symptoms. I had every test under the sun, cameras up, cameras down, scans, blood tests, tablets galore. Eventually the blood tests revealed mild lupus, fibromyalgia triggers and antiphospholipid syndrome (which basically means sticky blood and causes many of the same symptoms of tiredness, blurred vision, joint pain).

With all the tablets, being double the weight I should be (yes I did say double), I was a confused miserable mess. Very slowly I have managed to pull some sort of order out of that chaos. It is an on going process which is what I intend to blog about here.

What I do know is that talking to other people with any of the aforementioned conditions, they all have similar stories. One illness, operation after another. Lives in and out of hospital and specialists and doctors. These illnesses are often so hard to diagnose and the medical world's understanding of them is only just begining to work out ways of diagnosing and helping.

I have been a holistic therapist for the last nine years and now realise that my journey into this world, which has been so rewarding as a career, has really been to teach me ways of helping myself. It is strange how these paths work, how I have been lead and guided to be able to help myself start to make sense of learning to live with my illnesses. I hope that I can share some of that journey, that knowledge and my positivity here.

So welcome, thank you for reading