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.