I have decided to do regular updates for awhile so I can share my journey and maybe encourage or help others. At times it may be more I need the encouragement.
The past few weeks have been tough as mentioned last time I have Occipital Neuralgia ON for short and have come home from the city. I had a cold and found new triggers which make things worse and was not doing well. Last week was tough there were times I just wanted to sit by a brick wall and bash my head against it. Don't get worried I often wear my hair in a pony tail and that stops it hitting the wall I DO NOT want to inflict more pain. It was the idea of it that resonated with me. I did find I sat by the wall either inside or out on the porch in the warmth. I spent a lot of last week crying and missing mum.
I miss mum not for how she was at the end but the little child in me who wanted her mother when she is ill to just say it is going to be alright. There are times I feel very much alone. I know there are people all over the world praying for me and do appreciate it. It's just last week was a really hard week. The pain was up around level 4 most of the week and getting over a cold I just felt down. I also knew my neck was very tight and sore. I saw the Physio and she was able to loosen it up again and help with the pain, lowering it to around a level 2. I also seem to need to nap a lot in a day.
From the weekend I am doing better. I have found when I need a rest I need to have one. I will do an hour or so of work then I know I need to rest. I am finding an hour to go shopping etc is about all I can handle. I sometimes nap 4 times a day but I find when I do rest I feel better and the pain is more controllable. Noise is still a big issue. The guy next door just started using a loud machine and thankfully it was only a short time because I was about to get ear plugs to try and cut it a little. I find shopping at times trying I get in and out quick cos of the noise. I am going to see an audiologist to see about custom earplugs or what can be done. Have to see what the cost would be.
After talking to my dr I may have to manage the pain and may have to put up with it and I can if I can control the noise issue. I have a book to read on manage your pain and reading slowly on the computer as reading is still an issue but what I am reading is now making sense. I can up the meds one more time and if they don't do much more I think I will ask about lowering them to the point where they help. As I haven't seen a lot of change for the last few raisings of the med and if I can lower it I can deal with the side effects better. I did notice a slight difference this last time.
I know the ON does cause issues as do the meds. I use to walk up to 90 mins in a morning now 20 mins and I am exhausted. I am not sure if its the meds or the ON. This was happening when I was on a low dose of this drug and the amount I can walk hasn't changed raising it. I also have found due to an injured left wrist I used my right side more to carry shopping etc and now if I have things on my right side the pain goes up and the neck and shoulder really hurt. Even with the back pack the weight is too much.
I feel at times like a prisoner in my own home as I often would go for a walk in the afternoon which I am no longer doing due to being to tired. Also certain events when there will be a lot of noise I have to make the choice if I can handle it or if I have to miss out and protect myself. Which is why I am not in Adelaide watching the cricket live. I would not cope at this point of time but I accepted that and know there will be other games. I know this could be a long term condition but I am praying if it is I can put in strategies that will help me live as normal a life as possible. If it means resting several times a day to be able to cope so be it.
I wrote this before I saw the Audiologist and I saw him today the cost is what I can afford I have some money set aside which will pay for it. He took moulds today and boy was it quiet. My figuring its better to buy custom made ear plugs that will last a few years than the cheaper ones that need replacing every couple of weeks. These will fit my ears snug.