I consider myself very lucky in many respects. First of all I am lucky to be here in the first place as my mum had to have her appendixs out when she was 6 monhs pregnant with me; she was warned she might lose me, and they operated and managed to save her and me. So yes I feel very lucky. I apologise in advance if this article bores the pants off you my aim is only to try and help others in a similar situation; some things I do may help you too.
I have since the age of 7 had to deal with health issues, initially epilepsy, and latterly Auto Immune Disease. I try and keep myself as healthy as I can - sometimes I achieve it and at other times I don't quite do so well. But I firmly believe that you can help yourself a great deal in the long run. In my experience I have had to find my own way around different conditions and find things that work for me at the end of the day. The Doctor's know a lot but they dont know everything and cannot always advise how best for you to manage your condition that comes down to trial and error and pushing parameters your own learning curve and experience. I tend to push parameters see what I can do and if it makes you poorly you don't do it again.
I hope that if you also suffer from similar conditions specifically Auto Immune conditions that my take on things and what I do to try and keep myself going will give you some ideas of how you may help yourself and not feel helpless and frustrated and a victim of your condition. I hope it helps you take control and make informed decisions about what you will try and what you won't try. If something works for you then use it - but if it doesn't it is not necessarily not any good, it just does not work for you or is not suitable for your system. There are some drugs I am terribly allergic to, which have been prescribed for me by Doctors and which have made me very ill. Its a pity they cannot come up with a test which could give indicators as to any kind of reaction, would save an awful lot of pain and heartache.
As a two year old I had been crippled with arthritis from the waist down and could not walk first thing in the morning, but it was found that if I was put before a fire my legs used to "thaw out". Mum took me to the Doctors and she was advised by the Doctor that after examining me that I had sustained a bad attack of arthritis and if it happened again mum was to give me half an aspirin! Needless to say I did not have another attack of this level.
As a child of 7 I was diagnosed with mild epilepsy. I and my family were encouraged to report back to the Consultant on how I was doing what we had tried what was happening etc etc. And we fed back appropriate information as requested like I needed to do everything in moderation i.e. early regular nights, regular eating habits - etc etc and that excitement seemed to make the attacks worse as did stress. That I was always worse at a certain time of the month etc etc. The Doctors pooh poohed me saying this couldn't happen that couldn't happen but it did. Then some three years later they were telling me not to do this try doing that - all of which I had addressed some three years before! I also was resentful of having to take long term medication, although I appreciated that I actually needed it. I therefore don't as a result believe that all answers lie in a pill bottle but there are alternative ways of helping yourself. I am quite happy to use certain foods to help me in my fight against long term conditions and in order that the condition is just that and that I still live my life as fully as I am able.
I therefore came to the conclusion that there was only one person that could really help me and that was me. Perhaps I am a little radical in my perspective, but I always with due diligence try and work with what resources I have available to me including prescribed medication.
About six years ago I had extreme tiredness and yet I was hardly doing anything apart from going to work so I went to the Doctors and it turned out that I have Rheumatoid Arthritis antibodies,(although not the condition - I will now always have these in my blood and could go on to develop the condition I also have lupus antibodies), Osteo arthritis, CREST (which is a title for list of things that are symptoms but which don't apply to any specific one condition) all of which are immune system diseases and something wrong with my blood. I also have Raynaud's Syndrome where I lose the circulation in my hands because the nerve endings are too close to the surface of the skin and they feel the change in temperature earlier than other people do.
My mother suffers from immune system disease as have other members of her family - all however entirely different problems, that is why I mention the genes factor. I am on medication that attempts to control the production of antibodies in my system. It is the antibodies that do the damage to the joints and my system, therefore trying to keep them under control is a must and I take an NSAID medication called Arcoxia. However, I have regular break throughs or periods of extreme tiredness and pain due to the antibody levels rising.
At times of increased activity from the antibodies I end up with more pain and I have been told to use paracetamol for the pain, but I also use fresh pineapple for preference but tinned if not for the pain. There is a natural ingredient called bromelian in pineapple. Yet again this does not work for everyone but it helps me. The following day following an attack if I have taken medication I am not firing on all pistons but if I use the pineapple I am more than comfortable and firing on all pistons and don't have that doped up feeling. I told my Consultant about what I was doing as he had seen a marked improvement in me and so I told him. His response was well I can hardly prescribe pineapple can I and I am afraid my retort was - why not! My thinking is that it would be cheaper than some of the medication. (addendum to this I notice that some well known joint care capsules now contain bromelian - so I must be on the right track somewhere down the line).[If you cannot eat pineapple (some people are allergic I believe you can obtain bromelian pils from the Health Food shops)
I also use exercise by walking everywhere to help dull the pain, as exercise releases endorphins into the system and hels to control the pain levels in your system naturally. I also use ginger in whatever form I can as it helps warm my system up. I also wrap up well and use layers of clothing to keep me warm as if I go cold it makes me poorly.
At the end of the day these are only conditions they can be coped with - you will have good days and bad days and it does your head in and is extremely frustrating. Arghh! Its okay to throw a wobbly when it gets too much - releases the tension. Long term illness can affect your self esteem, your moral and can depress you even if you have not been depressed before. Please don't worry if you experience any depression, you are not going mad it is all part and parcel of the cycle of long term illness and yet another symptom of your body struggling to cope with what is happening to it.
If depression does strike you are usually not producing enough seratonin in the brain but this can also be controlled. The latest thinking is that bananas are very good for depression. I absolultey adore bananas but they don't like me within about 10 minutes of eating them I am crippled up with stomach pain and having to rush to the loo. They give me colic and I end up poorly and out of sorts for a good 24 hours not pleasant. But if you can eat them give them a try. I have the midnight gremlins (panic attacks where I don't feel I can cope or that I want to go to sleep) every so often but I have found that if I get up and have some milk and a biscuit this settles me down and it calms me down. (There is a natural sedative in milk that helps you sleep - therefore it is quite good for you to have a hot mug of milk before you go to bed)
What I do know is that your system is peculiar and exclusive to you - you are unique a one-off and what happens to you may well not happen to another, and to some extent it is all to do with your genes (in my case we have both arthritis, Rheumatoid Arthritis, stomach arthritis and Temporal Arthritis in the family). Therefore the treatment/treatments should be tailored to you. Doctors and medicine manufacturers tend to tailor for the masses rather than the individual. This is why there is a problem with vaccines for youngsters and youngsters being damaged because their system doesn't cope with what is being introduced into it. Now if they could work on a test that would identify those children that are susceptible then maybe all children could be safe in the long run. Anyway I digress.
In my case because the Doctors could not tell me what to do to improve my condition I was willing to try anything - I received the blessing of my GP to try alternative therapies (holistic) and the only thing I was told not to use Chinese medicine as a lot of this medicine contains steroids which could mask or aggravate the symptoms already experienced by the sufferer/patient and suppress my system even further. I was also told that any alternative practitioner was banned from touching my head - so I have not been able to try Indian Head Massage, but I have tried other holistic therapies such as Reiki, Aromatherapy, etc. You have to feel positive to act positive and these therapies do play their part in giving you time to relax - me time. Something tha women generally do not do. These therapies are not introducing anything unnatural into your system and help relax you which is all part of the healing process as well. As I am a Reiki Practitioner too, I also use Reiki to help control and ease my condition.
Long term illness is very limiting you and extremely frustrating especially as you are not necessarily able to do things when you feel like doing them because you don't have the energy. Please listen to what your body is telling you and please be kind to yourself, please don't whip yourself or beat yourself up this will make you worse. Its not your fault you have these conditions and you have to learn to think and act with a whole different mind set. And deal with what you have rather than what you haven't.
I can trace most of my problems in later life back to a bad gastroenteritus attack (which left me with a leaky gut and the wrong flora in my gut) I have read somewhere that Doctors believe that most disease emanates from the gut although they will not publicly admit this). This kind of made sense to me. If you think about things logically the gut is our waste disposal system and how quickly we get rid of things varies from person to person. So if you do have a leaky gut you are losing good bacteria because it is either being killed off by something or you are not producing enough of the right bacteria; or that the exposure to chemicals in your system are seeping into your infrastructure so to speak. Also if your system does not absorb the vitamins and minerals provided by your food source it doesn't matter how much of these minerals and vitamins you take if you cannot absorb them it doesn't matter how much of them you eat they still will not do you any good. Armed with that information I started to research what I could actually do for myself. In those days they never used to prescribe yogurt to help calm the system down after a bad attack of gastroenteritis or indeed with attacks of cystitis. Nowadays they do.
I also discovered I had a food senstitivity to coffee. I am a legal secretary by trade and was dealing with Social Services Children Act matters at the time as the speciaility and anything connected with this work had to be dealt with straight away because a child was involved and possibly at risk. I was therefore using coffee as an adrenalin rush to help me achieve very tight deadlines and as a stimulant to my system. However I believe I somehow over egged the cookie and it ended up working the other way round, and producing too much natural insulin in my system, making me retain weight and also sleepy which in turn was aggravating my symptoms and giving me very bad IBS. I was lucky I did an elimination diet and quickly found Coffee to be the culprit. I now very rarely drink any coffee but I do have an Actimel or similar every morning which helps put the right flora in my gut so food etc can be processed properly. In effect it puts a lining on your stomach and gut and because it is a live yogurt you are putting in the right flora to process the food and allow your system access the vitamins and minerals contained within the food you eat. People with the conditions mentioned above often don't make the right flora or not enough of it, so it has to be put in each day. It doesn't matter how much food you eat with minerals and vitamins in etc if your body is unable to assimilate and process it properly it won't do you any good and the lack of such vitamins and minerals will make you ill in the long run.
Having an Actimel or similar every morning also helps support your immune system, which is the hidden system in the body which controls and helps everything else work properly.
I was also told not to eat pre-processed food and to concentrate on a more wholefood diet that has no nasties or preservatives in. Apparently processed food takes longer to go through our systems and leaves a residue behind.
Sorry if I have gone on a bit I have tried to be brief, but some of this may help you manage your condition and take control of similar conditions
Hope this helps