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.
Thursday, 4 July 2013
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,
Wednesday, 9 May 2012
M.E Awareness week
Ive only just realised thast it is M.E awareness week and wish to share this great informative article based around fact versus fiction.
M.E article
It really is silly just how many people do believe M.E is all in the mind. Time for a mini rant.
All my life I have enjoyed being VERY active. Up until 7 years ago I cycled or walked almost everywhere within 15 miles. I worked 12 hour shifts as a nurse, I enjoyed decorating my home, loved gardenning and loved nothing more on a weekend off than to pack up and go to the Lake district, camping and hiking, pushing myself to the limit and climbing more hills each time. Life changed a bit, I moved, got divorced and changed jobs, but continued to be very active right up until the week before the M.E hit me hard, hiking and snorkelling on holiday on Bali. Then suddenly I could barely make it up one flight of stairs, I often had to stop twice, or ascend a couple of steps at a time on my bum. I couldnt dry my hair with the hair dryer, struggled to hoover one small room or prepare a meal.
I did not take this lightly. It took 7 months before my GP agreed with me that it may be M.E and I was not referred to a specialist and got very little information, my doctors were pretty poor to be honest. It wasnt until a good couple of years on that I actually had a consultation with a specialist, resulting in several further appointments with an Occupational therapist. Overall the amount of input from the NHS has been negligble and pretty poor. I have learned more and helped myself more by researching the condition, keeping up to date, talking to other suffers and by learning how to pace my activities.
The single most frustrating thing about having M.E for me is not being able to be active, I miss cycling, hiking, swimming, pushing myself to my limits by trying to cycle a route faster each time. Now, although I have adapted, I still get frustrated as I have learned new skills and have new dreams, yet because of the M.E it is incredibly difficult to make those dreams come true. i have so many wonderful ideas that I want to bring to fruition, but I can only manage them very slowly and often with some assitance from friends or family. If I did not have this condition then life would be so different, my determination would take me far and I know that I could achieve so much. As it is I still have that stubborn determination and will just have to plod away slowly at my goals.
I openly welcome anyone who does not believe that M.E is a physical illness to come and spend time with me, see me on my good days and my bad days. See the sheer determination it takes to get through just half a day of what any well person considers an average day and then observe the effects over the following days, then look me in the eye and tell me I am lazy!
rant over for now.....
M.E article
It really is silly just how many people do believe M.E is all in the mind. Time for a mini rant.
All my life I have enjoyed being VERY active. Up until 7 years ago I cycled or walked almost everywhere within 15 miles. I worked 12 hour shifts as a nurse, I enjoyed decorating my home, loved gardenning and loved nothing more on a weekend off than to pack up and go to the Lake district, camping and hiking, pushing myself to the limit and climbing more hills each time. Life changed a bit, I moved, got divorced and changed jobs, but continued to be very active right up until the week before the M.E hit me hard, hiking and snorkelling on holiday on Bali. Then suddenly I could barely make it up one flight of stairs, I often had to stop twice, or ascend a couple of steps at a time on my bum. I couldnt dry my hair with the hair dryer, struggled to hoover one small room or prepare a meal.
I did not take this lightly. It took 7 months before my GP agreed with me that it may be M.E and I was not referred to a specialist and got very little information, my doctors were pretty poor to be honest. It wasnt until a good couple of years on that I actually had a consultation with a specialist, resulting in several further appointments with an Occupational therapist. Overall the amount of input from the NHS has been negligble and pretty poor. I have learned more and helped myself more by researching the condition, keeping up to date, talking to other suffers and by learning how to pace my activities.
The single most frustrating thing about having M.E for me is not being able to be active, I miss cycling, hiking, swimming, pushing myself to my limits by trying to cycle a route faster each time. Now, although I have adapted, I still get frustrated as I have learned new skills and have new dreams, yet because of the M.E it is incredibly difficult to make those dreams come true. i have so many wonderful ideas that I want to bring to fruition, but I can only manage them very slowly and often with some assitance from friends or family. If I did not have this condition then life would be so different, my determination would take me far and I know that I could achieve so much. As it is I still have that stubborn determination and will just have to plod away slowly at my goals.
I openly welcome anyone who does not believe that M.E is a physical illness to come and spend time with me, see me on my good days and my bad days. See the sheer determination it takes to get through just half a day of what any well person considers an average day and then observe the effects over the following days, then look me in the eye and tell me I am lazy!
rant over for now.....
My silver lining
Well I didnt mean to leave it so long between blogs, but life happens.
One thing that helps me get through having M.E and is also the "silver lining" from the whole experience is that I have discovered a new hobby. I was bought a camera about 3 and a half years ago by my partner and decided to learn how to use it on manual settings only. I also combined another hobby of mine - keeping reptiles and frogs, so over the years, when I have had enough energy I would practice photographing both my pets, and other macro or close up subjects such as flowers, water droplets, and insects at home. I would leave all my gear set up on a table so that I didnt need to waste energy setting up each time and I could spend a few minutes doing something I enjoy easily.
My love of photography has grown and although I often only fit in one session a week at present, I have come a long way. I have gained two qualifications - ( LSWPP -Licentiate of the Society of Wedding and Portrait Photographers and LSINWP - Licentiate of The Society of International Nature and Wildlife Photographers) and last year I was runner up as Pet and Architecture photographer of the year with the SWPP. I dont just enjoy photographing reptiles, I love landscape, architectural, wildlife, abstract and people photography, but my ability to practice these is limited due to the severity of the M.E at times and due to the fact that I cant drive to locations.
Over the last year I have tried hard to practice photographing models once a month, which has helped me to learn a great deal with lighting. I was introduced to the Bristol and south west modelling and photography group and have made lots of lovely friends that I collaborate with. Luckily there is a hall on the street where I live that I can share with other photographers, providing a super cheap location for portraiture and providing opportunities for us all to learn from each other and share equipment. I have also joined a local camera club which I thoroughly enjoy attending each week.
This week I had the opportunity to photograph a model, on location in Bristol, for a designer. Now although I struggled energy wise on the day, even though we only spent around 90 minutes in total taking images I am quite pleased with the results. We had a few things go wrong, what with lighting blowing around, getting lost, forgetting my main lens. But the end result was that Vogue italia website accepted two of the images from that day, which, myself, the model and designer were all thrilled with. One image was also given an editors choice award on Ephotozine aswell.
The down side is that whenever I spend more than an hour or so doing photography, then I suffer in the following days. So I am still recharging my batteries from Saturday.
One thing that helps me get through having M.E and is also the "silver lining" from the whole experience is that I have discovered a new hobby. I was bought a camera about 3 and a half years ago by my partner and decided to learn how to use it on manual settings only. I also combined another hobby of mine - keeping reptiles and frogs, so over the years, when I have had enough energy I would practice photographing both my pets, and other macro or close up subjects such as flowers, water droplets, and insects at home. I would leave all my gear set up on a table so that I didnt need to waste energy setting up each time and I could spend a few minutes doing something I enjoy easily.
My love of photography has grown and although I often only fit in one session a week at present, I have come a long way. I have gained two qualifications - ( LSWPP -Licentiate of the Society of Wedding and Portrait Photographers and LSINWP - Licentiate of The Society of International Nature and Wildlife Photographers) and last year I was runner up as Pet and Architecture photographer of the year with the SWPP. I dont just enjoy photographing reptiles, I love landscape, architectural, wildlife, abstract and people photography, but my ability to practice these is limited due to the severity of the M.E at times and due to the fact that I cant drive to locations.
Over the last year I have tried hard to practice photographing models once a month, which has helped me to learn a great deal with lighting. I was introduced to the Bristol and south west modelling and photography group and have made lots of lovely friends that I collaborate with. Luckily there is a hall on the street where I live that I can share with other photographers, providing a super cheap location for portraiture and providing opportunities for us all to learn from each other and share equipment. I have also joined a local camera club which I thoroughly enjoy attending each week.
This week I had the opportunity to photograph a model, on location in Bristol, for a designer. Now although I struggled energy wise on the day, even though we only spent around 90 minutes in total taking images I am quite pleased with the results. We had a few things go wrong, what with lighting blowing around, getting lost, forgetting my main lens. But the end result was that Vogue italia website accepted two of the images from that day, which, myself, the model and designer were all thrilled with. One image was also given an editors choice award on Ephotozine aswell.
The down side is that whenever I spend more than an hour or so doing photography, then I suffer in the following days. So I am still recharging my batteries from Saturday.
Thursday, 26 April 2012
Welcome to my blog
Hi guys
This is my first blog about my life since having ME.
I have had M.E for almost 5 years now, it came on fairly suddenly following a holiday abroad where I had cellulitis in my leg following a spider/insect bite. I’m not saying that was the cause but I experienced the symptoms following that. But I had experienced milder symptoms that were very similar in the preceding 2-3 years. Anyway, I can go into it more in depth as I blog more.
Presently, I manage to get out and about and do a few things that I enjoy, although I do suffer the consequences of even mild activity that lasts longer than an hour or two. The important thing is that it does not stop me doing the things I love completely, I just need to plan carefully and take things easy.
I have a very supportive partner who truly understands how the M.E affects me, and my young daughter is incredibly helpful on difficult days when I am less able. My family and friends are all supportive and understanding as well.
I have attended appointments with an occupational therapist who specialises in helping people with M.E, this was helpful as she taught me how to adapt and pace myself, although there was not a lot she could do to help with the physical symptoms, she did help me to focus positively on the future. I have tried graded exercise and this did help at one point, but I find that I need to approach this very gradually, and even minor illnesses can set me right back, causing me to start with very little spells of very light activity again. I did manage to get fairly active for a few months, a couple of years ago, walking up to 3-4 miles in a day, 3 times a week, but that is the best I have managed since the onset. Currently I get exhausted from a ten minute slow walk to the local shops and back.
Well that’s enough to start with, I will write regularly. Hopefully this will act as a record of my life with M.E and how it affects me, and hopefully it will help others to understand.
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