The past few days i have hardly done anything, i have been using my laptop to play games, but i have not left the house. We are going away for a long weekend from friday to monday. It isnt really a holiday of sorts we are going to some conferences with some close friends although it is doubtful that i will be able to attend many of them if any.
I have been resting, conserving energy for the events that are going to happen over the next few days, tomorrow i have a doctors appointment really early at about 0815 in the morning and then we are going via train to visit the Fibromyalgia Centre which is about 30 minutes away. After which we have to come home and pack to go away on friday.
Friday we are leaving very early in the morning, i dont know how long it is going to take me to get over the journey, its about 6-8 hours depending on traffic as it is bank holiday, its the first proper journey i will have been on since i became ill, we did go away in september 2007 but i did not have all these issues with my joints. It may take me the whole weekend to recover but i am hoping it doesnt.
We are staying in a hotel with Breakfast and dinner so at least we dont have to worry about that, i may spend most of the long weekend in the hotel room recovering from the journey or resting as i get extremely fatigued, i dont know whats going to happen yet. I am taking my laptop with me so i will have some form of entertainment and i believe we are going to have the internet in the room.
If i have enough energy to attend any of the conferences i will go, Simon bought a ticket to attend all of the conferences but i can buy a ticket to individual conferences as we didnt see the point in buying the same as Simons ticket if i was going to be be ill for the whole time.
I hope everything works out okay and if i am lucky and do have some energy we may be able to go out and see some of the local sights to where we are staying. If not at least it is going to be four different walls to look at than the four walls i look at ; at home.
Wednesday, 30 April 2008
Monday, 28 April 2008
Time goes by..
Not much has been happening; to be honest it probally has, but time has been going so fast that i feel that i have been taken out of time and that i am just watching it pass me by.
The Morphine patches do seem to be helping overall but the pain does seem to be getting more intense, when it does get bad i try to stand up if i am sitting down, or sit down if i am standing up and that does seem to help a little but not for very long.
My Gp has refered me to see the Rhemotology Dept, although i was originally diagnosed by the neurologist it wasnt technically his dept so i have to see a Rhemotolgist and Fibromyalgia is there department and i have to be diagnosed again and homefully things will move on a little bit more. The only thing that worries me after all of this is what if they dont think it is Fibromyalgia, i truely believe it is fibro it does seem to fit the pattern and seems to have all the symptoms but apparently some Rhemotologists dont believe that Fibromyalgia exists, so instead of taking several steps forward i could end taking a million steps back.
I have been suffering from Insomnia another common ailment of Fibro and now my sleep pattern is totally screwed up i want to sleep in the daytime and be awake in the night time, it has its advantages and distadvantages. I am still very restless at night time and it means that if i slept the same time as Simon then i would keep him awake at night time and his quality of sleep would not be good so he would be tired when he would have to go to work the next day.
I have also been sleeping alot generally i dont know if this is a mixture of my medications or the morphine or just the fibro generally but i think this one of the reasons i am feeling that life is passing me by so quickily.
The company that i work for came to my house several weeks ago to discuss my current work status as i have not worked since july 2007 they said i have to attend an Occupational Health meeting and that then i will have to attend a formal meeting to discuss whether i will be let go. However they had scheduled the Occ Health meeting for only two or three days time from the initial meeting and what with Simon working so many hours and unable to get time off work at such short notice and problems with my short term memory it wasnt possible to attend the Occ Health meeting, they played games with us a little but in the end they agreed to make the appointment for a different day. We got another date in a letter in the post however Simon has a course that day so he is going to have to give them a call and rearrange it.
The Morphine patches do seem to be helping overall but the pain does seem to be getting more intense, when it does get bad i try to stand up if i am sitting down, or sit down if i am standing up and that does seem to help a little but not for very long.
My Gp has refered me to see the Rhemotology Dept, although i was originally diagnosed by the neurologist it wasnt technically his dept so i have to see a Rhemotolgist and Fibromyalgia is there department and i have to be diagnosed again and homefully things will move on a little bit more. The only thing that worries me after all of this is what if they dont think it is Fibromyalgia, i truely believe it is fibro it does seem to fit the pattern and seems to have all the symptoms but apparently some Rhemotologists dont believe that Fibromyalgia exists, so instead of taking several steps forward i could end taking a million steps back.
I have been suffering from Insomnia another common ailment of Fibro and now my sleep pattern is totally screwed up i want to sleep in the daytime and be awake in the night time, it has its advantages and distadvantages. I am still very restless at night time and it means that if i slept the same time as Simon then i would keep him awake at night time and his quality of sleep would not be good so he would be tired when he would have to go to work the next day.
I have also been sleeping alot generally i dont know if this is a mixture of my medications or the morphine or just the fibro generally but i think this one of the reasons i am feeling that life is passing me by so quickily.
The company that i work for came to my house several weeks ago to discuss my current work status as i have not worked since july 2007 they said i have to attend an Occupational Health meeting and that then i will have to attend a formal meeting to discuss whether i will be let go. However they had scheduled the Occ Health meeting for only two or three days time from the initial meeting and what with Simon working so many hours and unable to get time off work at such short notice and problems with my short term memory it wasnt possible to attend the Occ Health meeting, they played games with us a little but in the end they agreed to make the appointment for a different day. We got another date in a letter in the post however Simon has a course that day so he is going to have to give them a call and rearrange it.
Tuesday, 8 April 2008
Update
The doctor i saw today was quite helpful after i had gotten all my repeat prescriptions sorted i explained that i have been in alot of pain for some time with no relief from the tramadol, we discussed a few options and in the end she put me on morphine patches that give 10micrograms of morphine every hour or something, she said it would be pointless to put me on 5mcg and if the 10mcg didnt work to put two patches on and i would be on 20mcg. She gave me enough for a months supply on 10mcg or two weeks at 20mcg. I hope this works i am fed up of being in pain.
The doctor said that it didnt look like the letter from the Neurologist and the Neurologist nurse had been recieved, but if it had it would have been addressed to my usual doctor and that she wouldnt have had access to it, she emailed my usual doctor and then arranged an appointment with my usual doctor and said if i needed any more of the patches to just arrange an emergency appointment.
I feel like i got somewhere.. kinda almost like one step forward and two steps back.. although technically i dont know if the letters have or havent been recieved.
The doctor said that it didnt look like the letter from the Neurologist and the Neurologist nurse had been recieved, but if it had it would have been addressed to my usual doctor and that she wouldnt have had access to it, she emailed my usual doctor and then arranged an appointment with my usual doctor and said if i needed any more of the patches to just arrange an emergency appointment.
I feel like i got somewhere.. kinda almost like one step forward and two steps back.. although technically i dont know if the letters have or havent been recieved.
Hiding the Pain
Everyone around me seems to have long gotten over their coughs and colds but i am still suffering badly, i am feeling the cold so badly at the moment, i am constantly tired and aching, more than i usually am with my fibro. Its a struggle to get out of bed which is why i havent written anything sooner; i have my laptop in bed with me now its the only thing keeping me sane, that, my kitten and my fiance.
Simon keeps asking me about how much pain i am in he said he can tell i am in agony from the look upon my face, i am really struggling to hide it but i dont want him to see how much i am suffering. I am so tired, if it wasnt for the pain i feel like i could sleep forever but each time i start to drop off the pain rudely wakes me up.
I have been taking tramadol but it doesnt seem to be touching it, i dont know if this is because the pain is actually much worse than before, it feels like it is or whether i am building up a resistance to the tramadol. I just need something to stop the pain.
I have made an appointment to see my GP (Doctor) today, i did it purposely when Simon is at work cause i dont want him to be there when i tell her home much i am suffering. My neurologist nurse upped my Topiramate a few weeks ago but that doesnt seem to be touching the pain in my head. I feel like i have taken backward steps and i dont know what to do.
I am a little concerned about seeing my GP as i know she knows nothing about fibro, when i went last time and told her about the pain in my hands and knees she tried to tell me i had juvinile artrithis, but i suppose Gps cant know about every single medical condition that is about. I usually see a different Gp maybe this one will know something and be able to help me, or maybe she will be worse!! if thats possible!
I am hoping that the GPs have recieved the letters from the Neurologist and the Neurologist Nurse by now though so that i can be refered to the Rheumotologist and also to the Physiotherapist with my Fibro, and get the ball rolling forwards. I can but hope!
Although it sounds odd i am looking forward to going outside for a short time to go to the doctors i have barely left the house over the past few weeks as i have been feeling ill and i am starting to feel a little cabin feverish.
Simon had to work all through when he had his cold, i really felt for him, he was quite poorly, but he had no choice but to work as he is still unable to get a permanant job and is working agency, if he takes time off work then he doesnt get paid, if he doesnt get paid, then there is no money for rent or bills or food.
There is a glimmer of hope for a job for him which is good but i am not going to get my hopes up too much as they might get shattered.
Simon keeps asking me about how much pain i am in he said he can tell i am in agony from the look upon my face, i am really struggling to hide it but i dont want him to see how much i am suffering. I am so tired, if it wasnt for the pain i feel like i could sleep forever but each time i start to drop off the pain rudely wakes me up.
I have been taking tramadol but it doesnt seem to be touching it, i dont know if this is because the pain is actually much worse than before, it feels like it is or whether i am building up a resistance to the tramadol. I just need something to stop the pain.
I have made an appointment to see my GP (Doctor) today, i did it purposely when Simon is at work cause i dont want him to be there when i tell her home much i am suffering. My neurologist nurse upped my Topiramate a few weeks ago but that doesnt seem to be touching the pain in my head. I feel like i have taken backward steps and i dont know what to do.
I am a little concerned about seeing my GP as i know she knows nothing about fibro, when i went last time and told her about the pain in my hands and knees she tried to tell me i had juvinile artrithis, but i suppose Gps cant know about every single medical condition that is about. I usually see a different Gp maybe this one will know something and be able to help me, or maybe she will be worse!! if thats possible!
I am hoping that the GPs have recieved the letters from the Neurologist and the Neurologist Nurse by now though so that i can be refered to the Rheumotologist and also to the Physiotherapist with my Fibro, and get the ball rolling forwards. I can but hope!
Although it sounds odd i am looking forward to going outside for a short time to go to the doctors i have barely left the house over the past few weeks as i have been feeling ill and i am starting to feel a little cabin feverish.
Simon had to work all through when he had his cold, i really felt for him, he was quite poorly, but he had no choice but to work as he is still unable to get a permanant job and is working agency, if he takes time off work then he doesnt get paid, if he doesnt get paid, then there is no money for rent or bills or food.
There is a glimmer of hope for a job for him which is good but i am not going to get my hopes up too much as they might get shattered.
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