On Thursday morning early I made my way by train to the national hospital for neurology and Neurosurgery in London for two days of testing. There had been much debate about whether my hubby (Ant) would come with me as I originally thought it would be nice, but later thought that I was being a bit wimpy about it especially as he would have to take two days off work. There were also practical things at home to be taken into consideration. We finally decided that he would stay at home on Thursday and come down on Friday morning to bring me home on the train.
The purpose of the trip was to have some testing done in the autonomic department to get some more specific information about my POTsyndrome and how it might be treated.
On Thursday morning after arrival I was fitted with a 24 hour blood pressure and heart rate monitor. The monitor recorded my data every 20 minutes throughout the day. In addition I was given a list of physical activities they wanted me to carry out at different times throughout the day, for these, I set the machine off manually to record the data . I could also manually start the machine if at any time during the day I got any "symptoms". I didn't write very much in the symptoms column of the diary sheet I was given and on reflection I think this is because after nearly 6 years of this condition lots of "symptoms" just seem normal to me.
Looking at the list of activities in the morning it didn't seem too difficult a challenge, although there was a fair bit of time management involved. I had to do things like walk up a flight of stairs, walk briskly for three minutes, lye, sit and stand for different time periods. The 20 minute readings finally stopped at 10.42pm, well after my normal bed time, at which point they then changed to hourly until the morning. At 9.30pm a manual reading after standing for a minute and then climbing a flight of stairs had to be taken. Once this had been done, the accumulative affect of the days simple activities had caught up with me and I had a few tears on my bed and regretted that Ant wasn't there with me.
After not too bad a night considering the machine was going off every hour I woke at 5am so hadn't had as much sleep as normal.
I was back at the autonomic department for a 9am appointment where I was taken into one of the testing rooms and the machine was removed and my diary handed in. I had been told by the very kind bio scientist that the mornings testing would take around two hours.
Laying flat on the tilt table, another blood pressure cuff was attached along with some other monitors and a cannula and I then had to perform some tests. The first was squeezing a pressure pad. With my left arm I had to squeeze the pad to a certain amount of pressure on a dial in front of me and then hold it there for three minutes, physically quite demanding, but my competitive nature wouldn't let it beat me. The second test was just deep breathing, that was fine. Next I had to count back from 490 in sevens. Quite pleased with how I did on that one : ). The third sounded simple too, I had to take a deep breath and then breathe out long and hard into a tube for 15 seconds. When I started breathing out though I realised that the tube I was breathing into was in some way pressurized and I was having to blow against that. It sounds so simple, but I felt so ill, I thought I was going to pass out (I was lying down to do all these tests). I can't properly explain how it made me feel, I don't think I have experienced anything like it before. I felt so bad and after this my legs started to tremble in the way they used to when I was first ill and I used to get night time shakes. We stopped the tests as I knew that if I just let it happen these trembles would travel up my body in waves and then eventually suddenly stop. This trembling, which normally happens at night, does usually leave me completely physically exhausted however. This time it was like the trembles were stuck in my thighs, they didn't travel up through my body, so to me they felt stuck. There were more tests to be done, one which involved clamping my hand and lower arm in a large ice pack and another, a panting exercise to induce hyperventilation. I knew at this point that I was completely out of control of my body and that I wasn't in a good state to carry on with these tests, particularly as I hadn't even done the tilt table test yet. Then turmoil set in as I was there in the lab and wanted to do the tests to provide the results, but my body was telling me not to do it. These days, I spend a lot of time telling myself to listen to what my body's telling me before embarking on any activity, but there and then I was desperate for them to get any info they could. Looking back now. I wasn't really in any fit state to make a decision about anything.
I rested for a while and then we decided to go straight on with the tilt table test. Having had this test once before I knew that being tilted to the 60 degree position did not feel good but last time once in position it felt like things settled and it was okay. This time it felt horrible and then got worse. My body is getting uncomfortable just thinking about it now. It was like such a heavy pressure on my head and on my chest. I tried everything to help myself , I tried meditating with a mantra and through breath and through imagining I could hear one of my favorite guided meditations. I tried visualizing myself enjoying a Roller coaster ride, and then being in my yoga class and in other safe feeling calm places, but my body wouldn't settle.
It was obvious after 5 minutes that things weren't going well and I was asked if I could just last another 5 minutes so that they could take another blood sample at 10 minutes and then I was brought down. My heart rate had gone over 150 beats per minute and I was struggling. I was upset and in tears, the tilt table test was supposed to last 45 minutes and I had only managed 10 and I hadn't managed the two earlier tests either. I felt like I had failed to provide them with as much data as I could have. Typing this now, I know I couldn't have done any more and my hope is that the fact I couldn't complete the test is in itself useful data. The scientist was very kind in trying to reassure me that they had enough information from the data they had.
I felt so rough, I don't really know how I managed to get with Ant back to the railway station. I was struggling to breathe and talk, my walk was a very slow shuffle and it was at least an hour before I could even tell Ant what had happened. I went straight to bed when we got home and I've been there for 3 and a half days. Today I have made it down stairs for a while. When I stand I feel woosey, off balance and nauseous. Most of all I am fatigued, and this is the bit people sometimes just don't get, they think I must be feeling tired and want to sleep. I'M NOT TIRED. I DO NOT WANT TO SLEEP. My body is fatigued there is no energy for anything other than the essential. Typing this is using all the energy I have. My hands are resting in front of the keyboard and my fingers are moving as little as possible, just applying a downward pressure to the keys is an effort for me right now. The middle finger on my right hand is trembling as I do it. I want to finish this blog entry though, because today is International ME awareness day and it's good to raise awareness and for people to know how ME effects someone they know.
I have no idea how long it's going to take me to recover back to my "normal". Hopefully not too long. As Ant so wisely and calmly says "It will take as long as it needs to take" and frustrating though it is, this is what we have learnt. Having ME is like riding a roller coaster of energy. We are not in control of how fast it travels, how long it hangs at the top or how deep the next plummet might be. Sometimes, because we don't want to miss out on the fun, we choose to jump out of the car and push it higher or faster than it wants to go and we do that knowing that we will pay for it with a more severe fall on the other side.
On the one hand, I think I was naive about how much the autonomic testing might take out of me, but on the other, I went into it optimistically and positively, believing the benefits of putting myself through it and the data it will give the doctors will make it all worthwhile. I just really hope that turns out to be the case.
The purpose of the trip was to have some testing done in the autonomic department to get some more specific information about my POTsyndrome and how it might be treated.
On Thursday morning after arrival I was fitted with a 24 hour blood pressure and heart rate monitor. The monitor recorded my data every 20 minutes throughout the day. In addition I was given a list of physical activities they wanted me to carry out at different times throughout the day, for these, I set the machine off manually to record the data . I could also manually start the machine if at any time during the day I got any "symptoms". I didn't write very much in the symptoms column of the diary sheet I was given and on reflection I think this is because after nearly 6 years of this condition lots of "symptoms" just seem normal to me.
Looking at the list of activities in the morning it didn't seem too difficult a challenge, although there was a fair bit of time management involved. I had to do things like walk up a flight of stairs, walk briskly for three minutes, lye, sit and stand for different time periods. The 20 minute readings finally stopped at 10.42pm, well after my normal bed time, at which point they then changed to hourly until the morning. At 9.30pm a manual reading after standing for a minute and then climbing a flight of stairs had to be taken. Once this had been done, the accumulative affect of the days simple activities had caught up with me and I had a few tears on my bed and regretted that Ant wasn't there with me.
After not too bad a night considering the machine was going off every hour I woke at 5am so hadn't had as much sleep as normal.
I was back at the autonomic department for a 9am appointment where I was taken into one of the testing rooms and the machine was removed and my diary handed in. I had been told by the very kind bio scientist that the mornings testing would take around two hours.
Laying flat on the tilt table, another blood pressure cuff was attached along with some other monitors and a cannula and I then had to perform some tests. The first was squeezing a pressure pad. With my left arm I had to squeeze the pad to a certain amount of pressure on a dial in front of me and then hold it there for three minutes, physically quite demanding, but my competitive nature wouldn't let it beat me. The second test was just deep breathing, that was fine. Next I had to count back from 490 in sevens. Quite pleased with how I did on that one : ). The third sounded simple too, I had to take a deep breath and then breathe out long and hard into a tube for 15 seconds. When I started breathing out though I realised that the tube I was breathing into was in some way pressurized and I was having to blow against that. It sounds so simple, but I felt so ill, I thought I was going to pass out (I was lying down to do all these tests). I can't properly explain how it made me feel, I don't think I have experienced anything like it before. I felt so bad and after this my legs started to tremble in the way they used to when I was first ill and I used to get night time shakes. We stopped the tests as I knew that if I just let it happen these trembles would travel up my body in waves and then eventually suddenly stop. This trembling, which normally happens at night, does usually leave me completely physically exhausted however. This time it was like the trembles were stuck in my thighs, they didn't travel up through my body, so to me they felt stuck. There were more tests to be done, one which involved clamping my hand and lower arm in a large ice pack and another, a panting exercise to induce hyperventilation. I knew at this point that I was completely out of control of my body and that I wasn't in a good state to carry on with these tests, particularly as I hadn't even done the tilt table test yet. Then turmoil set in as I was there in the lab and wanted to do the tests to provide the results, but my body was telling me not to do it. These days, I spend a lot of time telling myself to listen to what my body's telling me before embarking on any activity, but there and then I was desperate for them to get any info they could. Looking back now. I wasn't really in any fit state to make a decision about anything.
I rested for a while and then we decided to go straight on with the tilt table test. Having had this test once before I knew that being tilted to the 60 degree position did not feel good but last time once in position it felt like things settled and it was okay. This time it felt horrible and then got worse. My body is getting uncomfortable just thinking about it now. It was like such a heavy pressure on my head and on my chest. I tried everything to help myself , I tried meditating with a mantra and through breath and through imagining I could hear one of my favorite guided meditations. I tried visualizing myself enjoying a Roller coaster ride, and then being in my yoga class and in other safe feeling calm places, but my body wouldn't settle.
It was obvious after 5 minutes that things weren't going well and I was asked if I could just last another 5 minutes so that they could take another blood sample at 10 minutes and then I was brought down. My heart rate had gone over 150 beats per minute and I was struggling. I was upset and in tears, the tilt table test was supposed to last 45 minutes and I had only managed 10 and I hadn't managed the two earlier tests either. I felt like I had failed to provide them with as much data as I could have. Typing this now, I know I couldn't have done any more and my hope is that the fact I couldn't complete the test is in itself useful data. The scientist was very kind in trying to reassure me that they had enough information from the data they had.
I felt so rough, I don't really know how I managed to get with Ant back to the railway station. I was struggling to breathe and talk, my walk was a very slow shuffle and it was at least an hour before I could even tell Ant what had happened. I went straight to bed when we got home and I've been there for 3 and a half days. Today I have made it down stairs for a while. When I stand I feel woosey, off balance and nauseous. Most of all I am fatigued, and this is the bit people sometimes just don't get, they think I must be feeling tired and want to sleep. I'M NOT TIRED. I DO NOT WANT TO SLEEP. My body is fatigued there is no energy for anything other than the essential. Typing this is using all the energy I have. My hands are resting in front of the keyboard and my fingers are moving as little as possible, just applying a downward pressure to the keys is an effort for me right now. The middle finger on my right hand is trembling as I do it. I want to finish this blog entry though, because today is International ME awareness day and it's good to raise awareness and for people to know how ME effects someone they know.
I have no idea how long it's going to take me to recover back to my "normal". Hopefully not too long. As Ant so wisely and calmly says "It will take as long as it needs to take" and frustrating though it is, this is what we have learnt. Having ME is like riding a roller coaster of energy. We are not in control of how fast it travels, how long it hangs at the top or how deep the next plummet might be. Sometimes, because we don't want to miss out on the fun, we choose to jump out of the car and push it higher or faster than it wants to go and we do that knowing that we will pay for it with a more severe fall on the other side.
On the one hand, I think I was naive about how much the autonomic testing might take out of me, but on the other, I went into it optimistically and positively, believing the benefits of putting myself through it and the data it will give the doctors will make it all worthwhile. I just really hope that turns out to be the case.
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