Small steps – big differences

If you have been following my blog then you will know that I am going through some tough battles at the moment. I am in the process of finding out if I have Chronic Fatigue Syndrome and Fibromyalgia (twelve month waiting list for the local fatigue clinic – way to go NHS waiting times, only another possible nine months to wait). After having ruled out the majority of potential illnesses and disorders that a GP can exclude I am now going through the wonderful process of trying to find some way of managing the pain and fatigue so that I can function like a “normal” human.

My first crochet project

My first crochet project

Last time I wrote about My life, my journey… I was waiting to see my doctor again as I had been experiencing the worst flare I have ever had. The outcome was an increase of Gabapentin to 600mg per day and to go back on the Amitriptyline with a dose of 20mg per day (to help me stay asleep at night). Three weeks on and I am noticing a difference, I certainly hadn’t been feeling as tired as before, for the most part and the pain is more manageable than previously. However I am finding that most days I am maxing out on Paracetamol still (and the occasional Ibuprofen).

I forgot to keep up with the mild muscle & relaxation exercise techniques that I was going to try out, mainly due to the fact that my memory is shot to pieces and my brain seems more fuddled than I am used to. That is not to say I am not exercising though.  Over the past three weeks, I have managed to continue two regular garden stints (i.e watering, planting, pruning) a day and I have taken up crochet too (to keep me off Facebook and give me something constructive to do while recovering).

I revived these flowers over the past month

I revived these flowers over the past month

Although I am doing my best to keep myself active, I have noticed a decline in my social interactions. I haven’t been out very much and I haven’t kept up with my favourite hobbies. The only socialising I have been doing is when people come over here to visit or via social networks and even that has been tough on the old grey cells. Which leads me to believe that the latest flare has left me feeling very fragile on an emotional level. I have been hiding away almost like a hermit trying to protect myself from the outside world and all its influences. But what help is that to me really? All it has done has begun to cause all the negative thought patterns to creep back into my mind. Such as feeling guilt about not keeping the home clean and tidy and not seeing friends, anxiety and panic about how to keep the bills paid, feelings of uselessness or failure that I am not doing right by my children. All the emotions that if not dealt with can push me the over the edge into the dark abyss of depression. Thankfully my close family are very understanding and see my internal battles on an daily basis and allow me / encourage me to speak out. This is what really helps to keep the depression at bay.

FODMAP foods

FODMAP foods

Saying that though, there has been a slight “plus” side to having rested so much over the past month. With the fatigue levels almost at “my normal” and the pain virtually manageable I have been able to concentrate more on my diet, that is the diet where I find foods that don’t make me feel unwell and discover the foods that will eventually make me thrive and put on a little more weight again. I have already been on a gluten free diet for 10 months but have recently been asked by the GP to try the FODMAP diet. I don’t know much about it other than it is meant to be a good one for IBS sufferers. Basically there are many good foods out there that aggravate the intestines & bowels. Anyway, what I have had to do is eliminate certain foods containing fructose, lactose and other words I cannot remember or spell. When I first read through the list of foods containing FODMAPs I was able to eliminate a very large proprtion of them as they were foods that I don’t have anyway, which pretty much left just lactose products and a few of my favourite fruits. So this month I have cut out milk and other dairy products… And what a change I have noticed. On the occasions where it has been pretty much unavoidable but to have milk in a hot drink, guess what? It has aggravated the IBS symptoms. Trouble is I now have to read every set of ingredients on everything I plan to eat which makes choosing some foods a mammoth task.

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Categories: Life goes on, My life, my journey | Tags: , , , , , , , | 9 Comments

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9 thoughts on “Small steps – big differences

  1. I remember being on Amitriptyline, I had to be taken off it after a week because it gave me the feeling of wanting to jump out the second floor window which of course, would not have been a good thing. For my fibromyalgia, the only medication that works for me is Lyrica. Without Lyrica I cannot sit for more than a few minutes because of the pain, and working on my laptop is completely out of the question. I do hope you find some relief soon. Hugs.

    • I had heard that about the Amitriptyline, but thankfully I’ve not had that problem. I’ve been on it since Dec 2011 and for the most part it does help me have a good night’s sleep. When I came off it for a while I wasn’t sleeping properly and experienced my worst flare. I’m still in that flare but it’s more manageable now. However we are now truly into the good old English summer with highs in the 70s and humidity through the roof.

  2. Boy, I sure hope you get feeling better soon and get into the clinic ASAP. I use a very small dose of Seroquel (100mg) plus 1 mg Clonazepam to get and keep me asleep. Its making a huge diffeence in that I sleep through the night and wake up feeling ok. Still get tired easily, physically, after minor exertion and takes me awhile to get back on my feet (a day or two) after a major day out. I know exactly what you mean about worry. I feel very frustrated, stressed, downhearted that I can not cook, keep my house clean, visit friends and family, it seems its always one thing OR the other. I can visit friends but then I’m no good for anything else that day or the next. I take Paxil for the depression my CFS causes me, its a hard slog, stay in there. I’m also on a waiting list for a sspeciality clinic for CFS and fibro, was a 7 month wait as my Dr. put me in a semi-urgent, so hopefully Sept. and hopefully they will have more tips and tricks to help me stabilize, Good luck to you on your journey.

    • Thanks, I have begun to feel a little better but I am still protecting myself by not going out much.

      The weather isn’t helping much either, far too humid, this cause the pain to flare far too much. I have started to listen to my body more but it is hard to just lay down and let it rest.

      • It is , it is, the hardest thing to do is to be still…weird that. People say, you need ot do more, and its like, no, i need to learn do to do less.

      • Absolutely true. In life we are raised with the preconceived ideas of what we are supposed to be doing (everything) but in reality we have to train ourselves to slow down. I hate it, I have always been very active.

      • I despise it, I fight against it everyday, it’s been my biggest challange and probably always will be because I LIKE to be able to do EVERYTHING, and now I have to be so strict with myself. I want to go horseback riding but I have to consider the consequences, it might take me out for a week. So now I have to always be thinking, and limiting myself. Hates it, hates it !!

      • I’m with you on that and totally understand

      • hi, how are you, long tie no hear. My life is going to take a turn. well, they decided to send me to detox and after they have set me up with a psychologist and a psychiatrist, so i hope it all comes together.

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