Well Ive not kept up with my blog, yet again :) Slap my wrists
If you read my previous blogs you will recall I visited my GP and requested a re referral to the M.E specialist team at my local hospital. I contacted them a couple of weeks ago to say I was still waiting for an appointment - for some reason the GP had made no note of my request and had not followed it up. The Gp has since left the surgery so I saw a different one, a Dr Lee - who actually listened! I had all my bloods checked just to make sure there was no other cause for my symptoms and they came back normal. The Dr dictated a letter to the specialist in front of me. He also prescribed anti depressants after a long discussion. The symptoms of depression are secondary to the M.E and largely as a result of my sheer frustration at not being able to function physically or mentally to my usual level over recent months. I was hesitant regarding this treatment, but he felt that they may help me to function better and that I can always stop taking them if they don't help. So I'm giving it a trial to see.Taking supplements has not helped at all.
So my life has been a bit drab over recent months, managing to go out less and less. Ive started going back to the camera club as I enjoy socialising there and miss a few of the friends Ive made. I'm going to try to make every meeting regardless of how I feel as currently its just about the only time I get out.
I'm putting the photography pretty much on hold for now, with only occasional short spells until I feel more able physically. But I'm replacing the effort with watching workshops on Creative Live for free, so at least I'm learning. I'm also trying to build on my photoshop skills - on the days where my brain is actually functioning :) Although even this tires me out easily.
Tuesday 22 October 2013
Thursday 4 July 2013
The consequences of enjoyment!
So last night was pure hell. After writing that blog the pain intensified over the next two hours and was past the bearable point, there was nothing I could do to ease the pain. This went on until around 6 am. I didn't sleep all night, not that I wasn't weary, but my body simply would not let me. I finally managed 4 hours of sleep this afternoon after being awake for 32 hours, so consequently I'm just not functioning well now. I've had to reschedule a visit from a friend tonight which is also frustrating, I don't like to mess people around, luckily he is very understanding.
I used to nurse rheumatology ( arthritis etc) patients for many years and and was always in awe of some of our regular patients, how they carried on stoically in constant pain. I admired them very much, many hardly ever complained despite living in pain day in and day out. Those patients became my role models, I still remember many of them 10 years on, if only they knew the positive effect they had on another person. Its those very people that help me get through a bad night like last night, I just remember that its only one night, a few hour,s occasionally that I experience high pain levels - they endure it on a daily basis for years.
I am not complaining, I am writing this blog to help people understand what it can be like having M.E and this is just my own personal experience, everybody's is different and each person can have different coping mechanisms.
I used to nurse rheumatology ( arthritis etc) patients for many years and and was always in awe of some of our regular patients, how they carried on stoically in constant pain. I admired them very much, many hardly ever complained despite living in pain day in and day out. Those patients became my role models, I still remember many of them 10 years on, if only they knew the positive effect they had on another person. Its those very people that help me get through a bad night like last night, I just remember that its only one night, a few hour,s occasionally that I experience high pain levels - they endure it on a daily basis for years.
I am not complaining, I am writing this blog to help people understand what it can be like having M.E and this is just my own personal experience, everybody's is different and each person can have different coping mechanisms.
Wednesday 3 July 2013
Dealing with worsening symptoms
I didn't really keep up with this blog, I felt that dedicating my time to concentrating on M.E in a blog could have a negative impact. But things have gone downhill so much this last few months and I am consequently spending more time at home with little energy that I thought I would restart it.
I feel the M.E symptoms have slowly and steadily got worse this year, and now that I'm struggling and suffering so much, I have had time to reflect. Because I was to fit and active prior to this condition it hit me hard and I never really appreciated just how much progress I made over the years. I was never satisfied with only being able to walk 3 miles, or only work at light activity levels for 5 -6 hours maximum once or twice a week. Now I'm experiencing more severe symptoms again - the worst since the first months of first suffering from it - I realise just how far I managed to push myself and that at my best points in the last few years I could actually manage to do more than some of my "healthy friends". People would say to me that I couldn't have M.E if I could walk 4 miles, they couldn't walk that far - I say to them that of course they can walk 4 miles AND they wouldn't suffer for days afterwards like I would. I actually managed a leisurely stroll around some woodlands a few weeks ago with friends, we walked about 3-4 miles in total over a few hours, with a break in a cafe for refreshments. We were all pretty tired by the end, but it was a lovely day out. But come the night time I was in agony, racked in pain, no relief from a hot bath, pain killers or anti inflamatories. I was exhausted but could not sleep the whole night - I never seem to be able to sleep following a more active day. The next few days the pain eased, but I couldn't manage more than simple basic looking after myself at home, having a shower or bath was exhausting, I couldn't dry my hair or cook a home made meal, Every step I took was like walking on the moon, or climbing Everest (without oxygen!). I could not concentrate enough to read, holding a conversation was tiring, and I would get my words mixed up. At least my friends would feel refreshed after a good nights sleep, I never feel refreshed or rested after a sleep.
Now I'm experiencing all those symptoms and more, yet all I'm managing at the very most is walking to the end of my street and back, which is 1/3 of a mile in total. Today my partner took me to the cinema, we parked nearby, so hardly any walking, then I did a little shopping - about 15-20 minutes on my feet. Then this evening I spent 45 minutes in our garden, sitting or lying down, taking photographs of a couple of reptiles. Now I am sat wide awake at 1:30 am, I'm experiencing severe pain in my arms, shoulders, neck and legs, pain killers haven;t touched the pain so 'I'm trying to distract myself to take my mind off the pain. I'm not feeling sorry for myself, I'm perfectly used to the pain.
So tomorrow I;m off to my GP to ask if I can be referred back to the specialist team at Frenchay, the Occupational therapist helped me quite a lot a few years back. I hardly ever visit my GP about the M.E, its a waste of time as there is little they can do about it, basically I've just needed to learn to adjust my lifestyle and pace my activities, but I'm hoping that in the years since I last saw the team there might be new ways they can help.
On the plus side, I've discovered a few good series on Netflix to keep me occupied when I cant get out and about and my brain isn't functioning enough to read. The difficulty with concentration, and mental functioning is more severe than it has ever been, I seriously struggle to hold conversations at times. This is the main area that I'm hoping the OT can help me with as I've no idea how to help myself with this and its led to my isolating myself a bit, I've even stopped going to the camera club mainly because of this inability to function mentally.
If there are any M.E sufferers reading this blog who have experienced worsening symptoms I would love to hear from you about how you coped,
I feel the M.E symptoms have slowly and steadily got worse this year, and now that I'm struggling and suffering so much, I have had time to reflect. Because I was to fit and active prior to this condition it hit me hard and I never really appreciated just how much progress I made over the years. I was never satisfied with only being able to walk 3 miles, or only work at light activity levels for 5 -6 hours maximum once or twice a week. Now I'm experiencing more severe symptoms again - the worst since the first months of first suffering from it - I realise just how far I managed to push myself and that at my best points in the last few years I could actually manage to do more than some of my "healthy friends". People would say to me that I couldn't have M.E if I could walk 4 miles, they couldn't walk that far - I say to them that of course they can walk 4 miles AND they wouldn't suffer for days afterwards like I would. I actually managed a leisurely stroll around some woodlands a few weeks ago with friends, we walked about 3-4 miles in total over a few hours, with a break in a cafe for refreshments. We were all pretty tired by the end, but it was a lovely day out. But come the night time I was in agony, racked in pain, no relief from a hot bath, pain killers or anti inflamatories. I was exhausted but could not sleep the whole night - I never seem to be able to sleep following a more active day. The next few days the pain eased, but I couldn't manage more than simple basic looking after myself at home, having a shower or bath was exhausting, I couldn't dry my hair or cook a home made meal, Every step I took was like walking on the moon, or climbing Everest (without oxygen!). I could not concentrate enough to read, holding a conversation was tiring, and I would get my words mixed up. At least my friends would feel refreshed after a good nights sleep, I never feel refreshed or rested after a sleep.
Now I'm experiencing all those symptoms and more, yet all I'm managing at the very most is walking to the end of my street and back, which is 1/3 of a mile in total. Today my partner took me to the cinema, we parked nearby, so hardly any walking, then I did a little shopping - about 15-20 minutes on my feet. Then this evening I spent 45 minutes in our garden, sitting or lying down, taking photographs of a couple of reptiles. Now I am sat wide awake at 1:30 am, I'm experiencing severe pain in my arms, shoulders, neck and legs, pain killers haven;t touched the pain so 'I'm trying to distract myself to take my mind off the pain. I'm not feeling sorry for myself, I'm perfectly used to the pain.
So tomorrow I;m off to my GP to ask if I can be referred back to the specialist team at Frenchay, the Occupational therapist helped me quite a lot a few years back. I hardly ever visit my GP about the M.E, its a waste of time as there is little they can do about it, basically I've just needed to learn to adjust my lifestyle and pace my activities, but I'm hoping that in the years since I last saw the team there might be new ways they can help.
On the plus side, I've discovered a few good series on Netflix to keep me occupied when I cant get out and about and my brain isn't functioning enough to read. The difficulty with concentration, and mental functioning is more severe than it has ever been, I seriously struggle to hold conversations at times. This is the main area that I'm hoping the OT can help me with as I've no idea how to help myself with this and its led to my isolating myself a bit, I've even stopped going to the camera club mainly because of this inability to function mentally.
If there are any M.E sufferers reading this blog who have experienced worsening symptoms I would love to hear from you about how you coped,
Subscribe to:
Posts (Atom)