I haven't written for a while because I just have not had time. M.E.-wise this has to be good, because normally if I don't write it's because I am too sick to write or have nothing to say because nothing has happened in my life due to being stuck inside.
I have finally finished my course - handed in all coursework etc. It feels good to have done 2 courses in the past academic year. I hope I pass the latest one. I did find it immensely stressful in the last 3 weeks and I was becoming very sick - especially in terms of pain levels and the Trigeminal Neuralgia starting to rear it's head badly (which is very interesting as stress is definitely a trigger!), but I am proud to have finished. I also managed 90% attendance.
I have been working hard on my business since then and also travelling around with my parents looking at boats. It's been nice to get out of the house a bit and to see other areas of England that I have not really seen before. I do find that even travelling in the car is very impacting on me, so I have been trying to take precautions like pillows, plenty of water, badger balm, painkillers, sunglasses/hat etc. I just need to be a bit more sensible about resting either side of a trip.
I really feel that LDN has made a difference to me now. I have been on it for nearly 8 months. Looking back a year ago, I would never have managed all this activity! I was pretty much housebound 90% of the time, and it was starting to impact my relationship with my family and my mental health too. It's not a miracle cure, as I am still essentially 'sick' - for example, I can't stand for as long as I would like before I need to sit down or at least walk to keep the blood moving around, I still suffer with the malaise/fatigue/exhaustion if I do not pace myself, and I am in a lot of pain all the time. Yet I do have better stamina, I am mentally feeling a lot better, I can feel that the disease progression has either halted or slowed right down so at least I don't seem to be getting worse anymore and I am generally better able to do things I was not able to do before - as in... I seem to have a bit longer energy/ability window each day before I have to throw in the towel or risk causing myself a mischief.
Friday, 12 July 2013
Sunday, 9 June 2013
Les Amandines in Diss - Vegetarian and Vegan Restaurant
I am not really sure what to write as I don't have a lot to say specifically. Hmmm...
Overall I have been doing quite well. I think the good weather we have been having lately has helped. If there's one thing I have learnt over the past year, it's been the effect that weather has on me! At the back of my mind for years (since my teens), I have known that I do better in a warmer and sunnier climate, but the reality of this is really marked/highlighted for me the past year or two. I just feel so much better mentally and physically when it's sunny and warm. Hot, humid... nope. Warm, sunny... yes. Of course trying to find a reasonable place to live in the world that is not hot and humid, but is sunny and warm for most or all of the year is like looking for a needle in a haystack. If I ever found it, I would probably find it also is a war zone or has tornadoes or earthquakes or something.
I went to Diss in Norfolk on Friday. My family and I wanted to eat in a vegetarian/vegan restaurant and where I live there are none. The nearest ones are in either Cambridge, London or Suffolk. Les Amandines in Diss,which is in Norfolk... it was a long way to drive.
My dad kindly drove us, but I did find the journey very taxing. If you live in East Anglia and are into vegan/vegetarian food, then Les Amandines is a great place to go to. It's so pretty! To get to it, you enter a courtyard of little shops: a sweet store, a health food store (great for stocking up, a delicatessen (did good cheese/vegetables/coffee), a gift store of some sort, and then the restaurant/cafe.
Once inside the restaurant, you have the option of sitting inside or in their atrium/covered courtyard area. We opted to sit in the covered courtyard as the weather on Friday was beautiful: sunny and warm. To decorate there are plants and strings of lights and bunting, a stone floor and rustic tables & chairs. The other part of the restaurant that is inside seemed cosy; there was one area with a sofa that looked as if it would be nice in winter. From a disability perspective, the negative is that there are some random steps (1 or 2 at a time) throughout the building as it is old and the toilet is up a flight of stairs (not sure if they have a separate disabled one, best to check if this is important).
The menu has sandwiches/paninis and a couple of platters, specials, soup and cakes. On the specials' board there were items such as a vegetable chili, spinach and ricotta canelloni, creole pate, and a hot soup, as well as desserts such as raspberry and almond tart with ice cream or steamed syrup sponge. The main meals like the chili and canelloni come with a salad and other accompaniments. It was all very tasty and fresh. The salad was, as to be expected in a vegetarian restaurant, very interesting compared to in regular restaurants. Their 'fizzy' drinks (soda) were a lot nicer and healthier than Pepsi/Cola etc, as they were using the Rocks drinks range and you could have either sparkling water or still water added.
My sister and I had the vegetable chili - it was really delicious and came with a very nice side of rice (I don't know what seasoning they used on the rice, but it made plain wholegrain rice taste yum!). The downside being that they used a lot of onion, and as I am allergic to it, I felt very daring eating it! It would have been nicer if they had included a more varied assortment of vegetables (some aubergine and courgette would have been a good addition). They did say, afterwards, that if we come again, to call up and they will make me something without onions which was kind of them. My sister, who is a vegan, had a vegan cake with vegan ice cream, which she said was very nice and I had a courgette and lime cake, which was superb! My parents had the cannelloni followed by the almond and raspberry tart - it all disappeared!
After we had eaten, we went into the health food store and picked up a few bits, including a bottle of Rocks Blackcurrant and Apple concentrate so we can make our own 'squash' drinks. I managed to walk into Diss and have a look in a few stores. There is a really nice bookstore that has a cafe/tearooms overlooking the lake, which I would like to try another time: Diss Publishing Bookstore (http://www.disspublishing.co.uk/).
Here are some pictures I took of Diss:
Overall I have been doing quite well. I think the good weather we have been having lately has helped. If there's one thing I have learnt over the past year, it's been the effect that weather has on me! At the back of my mind for years (since my teens), I have known that I do better in a warmer and sunnier climate, but the reality of this is really marked/highlighted for me the past year or two. I just feel so much better mentally and physically when it's sunny and warm. Hot, humid... nope. Warm, sunny... yes. Of course trying to find a reasonable place to live in the world that is not hot and humid, but is sunny and warm for most or all of the year is like looking for a needle in a haystack. If I ever found it, I would probably find it also is a war zone or has tornadoes or earthquakes or something.
I went to Diss in Norfolk on Friday. My family and I wanted to eat in a vegetarian/vegan restaurant and where I live there are none. The nearest ones are in either Cambridge, London or Suffolk. Les Amandines in Diss,which is in Norfolk... it was a long way to drive.
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| Les Amandines Diss - Courtesy of Tripadvisor |
Once inside the restaurant, you have the option of sitting inside or in their atrium/covered courtyard area. We opted to sit in the covered courtyard as the weather on Friday was beautiful: sunny and warm. To decorate there are plants and strings of lights and bunting, a stone floor and rustic tables & chairs. The other part of the restaurant that is inside seemed cosy; there was one area with a sofa that looked as if it would be nice in winter. From a disability perspective, the negative is that there are some random steps (1 or 2 at a time) throughout the building as it is old and the toilet is up a flight of stairs (not sure if they have a separate disabled one, best to check if this is important).
The menu has sandwiches/paninis and a couple of platters, specials, soup and cakes. On the specials' board there were items such as a vegetable chili, spinach and ricotta canelloni, creole pate, and a hot soup, as well as desserts such as raspberry and almond tart with ice cream or steamed syrup sponge. The main meals like the chili and canelloni come with a salad and other accompaniments. It was all very tasty and fresh. The salad was, as to be expected in a vegetarian restaurant, very interesting compared to in regular restaurants. Their 'fizzy' drinks (soda) were a lot nicer and healthier than Pepsi/Cola etc, as they were using the Rocks drinks range and you could have either sparkling water or still water added.
My sister and I had the vegetable chili - it was really delicious and came with a very nice side of rice (I don't know what seasoning they used on the rice, but it made plain wholegrain rice taste yum!). The downside being that they used a lot of onion, and as I am allergic to it, I felt very daring eating it! It would have been nicer if they had included a more varied assortment of vegetables (some aubergine and courgette would have been a good addition). They did say, afterwards, that if we come again, to call up and they will make me something without onions which was kind of them. My sister, who is a vegan, had a vegan cake with vegan ice cream, which she said was very nice and I had a courgette and lime cake, which was superb! My parents had the cannelloni followed by the almond and raspberry tart - it all disappeared!
After we had eaten, we went into the health food store and picked up a few bits, including a bottle of Rocks Blackcurrant and Apple concentrate so we can make our own 'squash' drinks. I managed to walk into Diss and have a look in a few stores. There is a really nice bookstore that has a cafe/tearooms overlooking the lake, which I would like to try another time: Diss Publishing Bookstore (http://www.disspublishing.co.uk/).
Here are some pictures I took of Diss:
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| Diss, Norfolk |
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| The lake at Diss was naturally created in the Ice Age |
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| Cute Mother Duck and Duckling |
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| The white building on the right is the cafe or tearooms part of the Diss Publishing Bookstore that overlooks the lake - very pretty! |
Sunday, 26 May 2013
Things Have Been Difficult - The Juggling Game
As I alluded to in my last post, things were beginning to become a little challenging. In typical me (or M.E.) fashion, I started to relapse or crash or whatever you want to call it...I managed about 2 weeks of doing my extra course that required A LOT more effort, travel, carrying things, walking... and then it started...
It's so disappointing. No matter how long I have been ill, I have still not managed to shake the disappointment resulting from yet another of my attempts at doing something, and then suffering for it.
I staggered on, missing one class of my language class, then managing one, then missing one and now it's the half-term break from both courses and I am sighing a big sigh of relief and trying to rest and relax and not focus on studying for a little bit. The good news is that while I enjoy my original language class, I actually only have one left after half-term, and for that I am grateful because I definitely would not manage to keep this non-sick friendly pace up any longer than that.
As a result of this whole situation, I did have a moment of self-doubt when I wondered: is LDN even doing anything?
On reflection, I realised that it seems to be working in a way I had not anticipated. Rather than being a miracle cure, which for me it is clearly not (and I didn't expect it to be), it actually seems to be preventing me from having progessive disease symptoms. I hadn't really thought about that before I took it and I hadn't really realised that it had happened. I had assumed LDN would just make me feel a lot better - not cured, but massively improved. In some ways it has made me feel better, although if I am honest it has been less than I had hoped. The biggest thing is that, for a long time before LDN, I was getting progressively worse, which was scary and very unwanted. Now, I am still sick in a big way, but it's sort of stagnant and stable. That is to say, I seem to be hovering in a 'range' of illness, rather than getting better or worse. The relapse fits within this range. It essentially feels the same as how I felt when I started taking LDN and was really struggling to cope with my body's reaction to the drug, so while it is still frustrating and a wee bit scary, it's not worse than before. If I obey the body and actually rest and pull back on activity a lot, I start to feel a bit better again... probably quicker than I did before taking LDN. So maybe it is fair to say my 'bounce back' factor is increased/faster?
I think it is useful to analyse in this way because I am definitely not going to stay on LDN if it is not doing a thing for me. I also think it can be easy to get used to how things are and forget how they were. At the moment, I have decided to order another batch of LDN, to gradually increase from 3.5 to 4.5, and try that for a while before making a decision over whether to continue it long-term.
Anyway, this whole experience coincided with me making a decision about whether to go ahead with hairdressing training in September. I basically had to make a decision within the next couple of months over whether to apply, and I was finding that a really stressful situation to be in. I think my difficulty was a mixture of me knowing that it would be a useful qualification for me to add (especially from an earning perspective) to my education, combined with me knowing how unwell I am, and how difficult I find it to even manage doing a few hours a week of studying... let alone a couple of days of physical activity, plus studying. I actually felt quite scared of the commitment and of signing up for something that I couldn't cope with, but felt compelled to stay on at because I am not a quitter and the financial commitment to such a course is massive and non-refundable. So rather than put myself through this, I have decied to postpone any attempts at achieving this goal, and to concentrate on my business and getting my health better.
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| Photo Taken by Me |
I staggered on, missing one class of my language class, then managing one, then missing one and now it's the half-term break from both courses and I am sighing a big sigh of relief and trying to rest and relax and not focus on studying for a little bit. The good news is that while I enjoy my original language class, I actually only have one left after half-term, and for that I am grateful because I definitely would not manage to keep this non-sick friendly pace up any longer than that.
As a result of this whole situation, I did have a moment of self-doubt when I wondered: is LDN even doing anything?
On reflection, I realised that it seems to be working in a way I had not anticipated. Rather than being a miracle cure, which for me it is clearly not (and I didn't expect it to be), it actually seems to be preventing me from having progessive disease symptoms. I hadn't really thought about that before I took it and I hadn't really realised that it had happened. I had assumed LDN would just make me feel a lot better - not cured, but massively improved. In some ways it has made me feel better, although if I am honest it has been less than I had hoped. The biggest thing is that, for a long time before LDN, I was getting progressively worse, which was scary and very unwanted. Now, I am still sick in a big way, but it's sort of stagnant and stable. That is to say, I seem to be hovering in a 'range' of illness, rather than getting better or worse. The relapse fits within this range. It essentially feels the same as how I felt when I started taking LDN and was really struggling to cope with my body's reaction to the drug, so while it is still frustrating and a wee bit scary, it's not worse than before. If I obey the body and actually rest and pull back on activity a lot, I start to feel a bit better again... probably quicker than I did before taking LDN. So maybe it is fair to say my 'bounce back' factor is increased/faster?
I think it is useful to analyse in this way because I am definitely not going to stay on LDN if it is not doing a thing for me. I also think it can be easy to get used to how things are and forget how they were. At the moment, I have decided to order another batch of LDN, to gradually increase from 3.5 to 4.5, and try that for a while before making a decision over whether to continue it long-term.
Anyway, this whole experience coincided with me making a decision about whether to go ahead with hairdressing training in September. I basically had to make a decision within the next couple of months over whether to apply, and I was finding that a really stressful situation to be in. I think my difficulty was a mixture of me knowing that it would be a useful qualification for me to add (especially from an earning perspective) to my education, combined with me knowing how unwell I am, and how difficult I find it to even manage doing a few hours a week of studying... let alone a couple of days of physical activity, plus studying. I actually felt quite scared of the commitment and of signing up for something that I couldn't cope with, but felt compelled to stay on at because I am not a quitter and the financial commitment to such a course is massive and non-refundable. So rather than put myself through this, I have decied to postpone any attempts at achieving this goal, and to concentrate on my business and getting my health better.
Saturday, 18 May 2013
Things Have Been Up & Down
As per usual, things have been up and down since I last wrote. On the positive side, I have been doing more for a while, but on the negative side, doing more has lead to me having lots of mini-crashes or PEM (post-exertional malaise). Exertion doesn't have to be 'exercise' as we might think of it... leaping around, running, cycling or even walking, but just doing more physical and mental activity in any form.
Once a week, I have been walking and carrying a heavy bag, plus standing more than normal and using my arms quite a bit. I noticed that, surprise surprise (not), it's erradicating the rest of my week. It is taking me so long to recover from it, that by the time the situation that requires me to engage in this non-M.E. friendly behaviour rolls around again, I haven't even recovered from the previous week's aftermath.
I don't want to complain, because the fact I am even managing to attempt all this physical stuff in the first place is amazing compared to pre-LDN where I was basically housebound except for the odd trip out in the car with mum. I just think it's a bit difficult to know that you are basically sort of making yourself unwell - in my case I am doing this because I need to for my career/profession and it's basically unavoidable. The good part being that it is not an ongoing thing, it does have an end date. I definitely would not be able to manage without an end date.
In better news, I found out I finish German class a week earlier than I thought, which is good. Not because I hate it or anything; I really do enjoy it, but because I find it so draining! It's first thing in the morning so I have to get up early. Since M.E. I have always struggled with getting up early and once I got thyroid problems, it has become almost impossible to rouse myself before 9 a.m. and be functional. Another thing I noticed is that if I do get up earlier, I basically use up my energy earlier, so I have to come to bed in the afternoon. On top of this, I find my brain is a. not working properly first thing in the morning and b. I find learning a language is mentally (and thus physically) fatigue inducing anyway... so all in all, I shall be glad to break from that.
To top everything off, Millie (my Yorkie) had a bad epileptic fit on Wednesday afternoon. We had to rush he to the vets. She was diagnosed with epilepsy. She has actually had 4 fits before, but was never diagnosed (the vets just advised us to monitor the situation) - 3 of them were when she was much younger and she one partial one last year in the midle of the night. This recent one was bad though, and very upsetting to watch. I am just hoping she doesn't have them any more frequently (or at all) as if she has less than 1 per month the vets won't medicate her... and I would rather not medicate her as a. it's expensive and b. it has horrible side effects. Of course this whole drama caused me so much stress, that I haven't been good at all since. I feel like a ragdoll, zombie person. She, on the other hand, seems to have recovered quite well!
Once a week, I have been walking and carrying a heavy bag, plus standing more than normal and using my arms quite a bit. I noticed that, surprise surprise (not), it's erradicating the rest of my week. It is taking me so long to recover from it, that by the time the situation that requires me to engage in this non-M.E. friendly behaviour rolls around again, I haven't even recovered from the previous week's aftermath.
I don't want to complain, because the fact I am even managing to attempt all this physical stuff in the first place is amazing compared to pre-LDN where I was basically housebound except for the odd trip out in the car with mum. I just think it's a bit difficult to know that you are basically sort of making yourself unwell - in my case I am doing this because I need to for my career/profession and it's basically unavoidable. The good part being that it is not an ongoing thing, it does have an end date. I definitely would not be able to manage without an end date.
In better news, I found out I finish German class a week earlier than I thought, which is good. Not because I hate it or anything; I really do enjoy it, but because I find it so draining! It's first thing in the morning so I have to get up early. Since M.E. I have always struggled with getting up early and once I got thyroid problems, it has become almost impossible to rouse myself before 9 a.m. and be functional. Another thing I noticed is that if I do get up earlier, I basically use up my energy earlier, so I have to come to bed in the afternoon. On top of this, I find my brain is a. not working properly first thing in the morning and b. I find learning a language is mentally (and thus physically) fatigue inducing anyway... so all in all, I shall be glad to break from that.
To top everything off, Millie (my Yorkie) had a bad epileptic fit on Wednesday afternoon. We had to rush he to the vets. She was diagnosed with epilepsy. She has actually had 4 fits before, but was never diagnosed (the vets just advised us to monitor the situation) - 3 of them were when she was much younger and she one partial one last year in the midle of the night. This recent one was bad though, and very upsetting to watch. I am just hoping she doesn't have them any more frequently (or at all) as if she has less than 1 per month the vets won't medicate her... and I would rather not medicate her as a. it's expensive and b. it has horrible side effects. Of course this whole drama caused me so much stress, that I haven't been good at all since. I feel like a ragdoll, zombie person. She, on the other hand, seems to have recovered quite well!
Sunday, 12 May 2013
M.E. Awareness Day & Explaining Fatigue
Today is M.E. Awareness Day, and I am a little late in posting this, but hey ho...
I wish I could have attended, but with all the stuff I am already doing, I am struggling to manage so there's no way I could have done that too. Maybe another year I will be able to go.
I have done some M.E. advocacy work in the past, particularly when I worked in offices - for example, I organised an information sheet when I worked in one office and gave a little talk about M.E. A lot of the time people had/have no idea I have this disease as I hide it well. I have had so much stigma in the past, that it has become easier to pretend there's nothing wrong or to just remain vague. I sometimes feel bad for doing that, as if I am doing a disservice to the M.E. community, but I guess that I even that out a little by writing this blog and when people do actually ask me for information in person, I try my best to educate them that it's definitely not just about: "being tired all the time".
When I was younger, other people retorting that they were tired all the time... too, as if that was all it was about, used to really annoy and upset me. It was invalidating. I felt frustrated at my inability to put my point across and to fight my corner, but then the reason I could not do that was partly because I have M.E. and the cognitive function is not 100% working or present in the way it should be. Nowadays I do still get people who assume that M.E. is being 'TATT', but it doesn't affect me in the same way that it used to. I understand why people make the assumption. It sucks, but I get that they don't mean it personally. I have a kind of resignation to the situation: that they will never understand, unless they are afflicted themselves. It's been liberating to be able to get to that place and to accept that this may be something I cannot change.
I think on the whole the general public are quite ignorant about chronic diseases like M.E. When a person says they are exhausted or tired or fatigued, I try to remember how I felt like when I didn't have M.E. and I felt tired. I know this sounds a bit weird, but I remember there is actually a healthy tired. It's the kind of feeling after exerting yourself by going out for the day, and then feeling ready for bed, a nice refreshing sleep and waking up in the morning feeling ready to face a new day. People with M.E. don't have that type of tiredness, nor do they have good sleep, or wake up feeling refreshed. It's not even tired, it's as if the car has run out of petrol/gas: there's nothing there... no flicker of energy, no spark of life... when even cutting up some food on your plate and getting it to your mouth becomes too exhausting, that's not normal nor is it healthy and it certainly is not just 'tired'.
If only being tired were the M.E. sufferer's sole symptom, who knows, it might even be bearable to have chronic fatigue syndrome (as some people like to call it), but it's not... the whole system is affected. Every single area of the body's function seems to be affected: heart, brain, nervous system, endocrine system, musculoskeletal system, lymphatic system... even urinary/renal... I can't even remember all the affected areas... but anyway, it's like a computer being corrupted by a virus: eventually nothing works and it kinda implodes. Okay, so I haven't imploded yet, but I have noticed that over the many years of living with this disease, I have gained more and more health issues outside M.E. and there have been a lot of times where I have expressed a feeling of my body 'falling apart' so to speak... progressively getting worse.
So that's my explanation for the year!
I wish I could have attended, but with all the stuff I am already doing, I am struggling to manage so there's no way I could have done that too. Maybe another year I will be able to go.
I have done some M.E. advocacy work in the past, particularly when I worked in offices - for example, I organised an information sheet when I worked in one office and gave a little talk about M.E. A lot of the time people had/have no idea I have this disease as I hide it well. I have had so much stigma in the past, that it has become easier to pretend there's nothing wrong or to just remain vague. I sometimes feel bad for doing that, as if I am doing a disservice to the M.E. community, but I guess that I even that out a little by writing this blog and when people do actually ask me for information in person, I try my best to educate them that it's definitely not just about: "being tired all the time".
When I was younger, other people retorting that they were tired all the time... too, as if that was all it was about, used to really annoy and upset me. It was invalidating. I felt frustrated at my inability to put my point across and to fight my corner, but then the reason I could not do that was partly because I have M.E. and the cognitive function is not 100% working or present in the way it should be. Nowadays I do still get people who assume that M.E. is being 'TATT', but it doesn't affect me in the same way that it used to. I understand why people make the assumption. It sucks, but I get that they don't mean it personally. I have a kind of resignation to the situation: that they will never understand, unless they are afflicted themselves. It's been liberating to be able to get to that place and to accept that this may be something I cannot change.
I think on the whole the general public are quite ignorant about chronic diseases like M.E. When a person says they are exhausted or tired or fatigued, I try to remember how I felt like when I didn't have M.E. and I felt tired. I know this sounds a bit weird, but I remember there is actually a healthy tired. It's the kind of feeling after exerting yourself by going out for the day, and then feeling ready for bed, a nice refreshing sleep and waking up in the morning feeling ready to face a new day. People with M.E. don't have that type of tiredness, nor do they have good sleep, or wake up feeling refreshed. It's not even tired, it's as if the car has run out of petrol/gas: there's nothing there... no flicker of energy, no spark of life... when even cutting up some food on your plate and getting it to your mouth becomes too exhausting, that's not normal nor is it healthy and it certainly is not just 'tired'.
If only being tired were the M.E. sufferer's sole symptom, who knows, it might even be bearable to have chronic fatigue syndrome (as some people like to call it), but it's not... the whole system is affected. Every single area of the body's function seems to be affected: heart, brain, nervous system, endocrine system, musculoskeletal system, lymphatic system... even urinary/renal... I can't even remember all the affected areas... but anyway, it's like a computer being corrupted by a virus: eventually nothing works and it kinda implodes. Okay, so I haven't imploded yet, but I have noticed that over the many years of living with this disease, I have gained more and more health issues outside M.E. and there have been a lot of times where I have expressed a feeling of my body 'falling apart' so to speak... progressively getting worse.
So that's my explanation for the year!
Sunday, 5 May 2013
My TV died... and so did my hen!
The week that has just passed was not bad, per se... it was quite good, but two things happened that were sad:
First thing: my favourite chicken died. Dottie my favourite because she was the tamest and she used to talk constantly, which was very cute. She would come and eat dried mealworms out of my hand, all the time giving a little hen commentary, while the other hens looked on jealously because they are not so brave... eventually one of them would pluck up the courage to join her. The thing that is sad about her death is that she was not old: only 3. She died peacefully, with her little eyelids closed shut. My dad found her on the lawn... just lying there. I cried some tears and then had a bath and tried not to think about it.
Secondly, my TV died. I have a TV in my bedroom because so much of my life is spent in or on my bed. I otherwise am not an advocate of bedroom TVs, but without one in here I would a. miss out on shows that I find quite informative, b. die of boredom, and c. - heaven forbid - be stuck to my laptop (which is very draining for me) watching catch-up shows. So yeah, the TV was an oldish one... oldish in my TV-age-analysis is anything over 10 years; mine must be at least 12 because I remember having it when I was about half-way through college. Funny thing is, it's a really random brand that I have never heard of and I am sure it was bought in Lidl!! It has lasted quite well, all things considered.
So anyway, I banged the set, and tried fiddling around unplugging and replugging it, and... nada. After I finally admitted defeat, I decided to look online the next day at TVs. Well, TVs are a lot more expensive than I remember... even a small-ish one, which doesn't really exist anymore... 19 inches is generally the smallest, although there was a random one that was something like 15.something. I remember you could get a TV for 50 or 60 pounds. Now it's 90, or more likely 110 or more. I am still searching, although I am not sure what I would even consider payable right now. I don't really have 'spare' money. I already put off buying a HR monitor as I realised I have a couple of birthdays, father's day, and my dog's vaccinations to pay for over the next few months, as well as all the usual stuff like parrot toys (they get through them!), pet insurance, and the monthly credit card payment... so a TV is not really happening. Argh. I guess I should have set up a 'rainy day' fund. Maybe this is my prompting!
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| Dottie, RIP |
First thing: my favourite chicken died. Dottie my favourite because she was the tamest and she used to talk constantly, which was very cute. She would come and eat dried mealworms out of my hand, all the time giving a little hen commentary, while the other hens looked on jealously because they are not so brave... eventually one of them would pluck up the courage to join her. The thing that is sad about her death is that she was not old: only 3. She died peacefully, with her little eyelids closed shut. My dad found her on the lawn... just lying there. I cried some tears and then had a bath and tried not to think about it.
Secondly, my TV died. I have a TV in my bedroom because so much of my life is spent in or on my bed. I otherwise am not an advocate of bedroom TVs, but without one in here I would a. miss out on shows that I find quite informative, b. die of boredom, and c. - heaven forbid - be stuck to my laptop (which is very draining for me) watching catch-up shows. So yeah, the TV was an oldish one... oldish in my TV-age-analysis is anything over 10 years; mine must be at least 12 because I remember having it when I was about half-way through college. Funny thing is, it's a really random brand that I have never heard of and I am sure it was bought in Lidl!! It has lasted quite well, all things considered.
So anyway, I banged the set, and tried fiddling around unplugging and replugging it, and... nada. After I finally admitted defeat, I decided to look online the next day at TVs. Well, TVs are a lot more expensive than I remember... even a small-ish one, which doesn't really exist anymore... 19 inches is generally the smallest, although there was a random one that was something like 15.something. I remember you could get a TV for 50 or 60 pounds. Now it's 90, or more likely 110 or more. I am still searching, although I am not sure what I would even consider payable right now. I don't really have 'spare' money. I already put off buying a HR monitor as I realised I have a couple of birthdays, father's day, and my dog's vaccinations to pay for over the next few months, as well as all the usual stuff like parrot toys (they get through them!), pet insurance, and the monthly credit card payment... so a TV is not really happening. Argh. I guess I should have set up a 'rainy day' fund. Maybe this is my prompting!
Saturday, 27 April 2013
How to Keep Busy and Stay Sane When You're Chronically Sick - Mindfulness?
Recently, as in the past couple of weeks, things have ramped up here. This is partly because I have gone back to class (and started a new one), and partly because I also had a couple of appointments and various things that needed attending to. As I have written before, managing this type of situation is quite difficult or challenging when you're struggling with chronic sickness. I am surprised and pleased to say that I think I have been doing quite well! I shall review this at half term, and see how I am managing once the culmulative effect occurs - hopefully things will continue to go well health-wise. I think when you have something like M.E. mixed with other health problems, it's the little achievements and triumphs that stand out - for me to even do any class/es is nothing short of a miracle, when you consider that a year or two ago, I couldn't even leave the house consistently (so couldn't plan to do a thing).
At the same time as being quite pleased with my progress, one of the things I have been struggling with is my anxiety levels. I would like to think that without chronic sickness, I would never have suffered from the anxiety that I suffer from. Pretty much all my mental health issues relate back to being ill. I get very anxious, apprehensive and nervous about new things because I worry that I won't be well enough to manage, or that I will be too sick on the day, or that I will go somewhere by myself and then collapse or be too sick to cope and what will happen to me... and those kind of anxious thoughts are self-perpetuating, so once you start down that road, it only gets worse! Some of it is probably unfounded, but some is founded in past experience. As one M.E. blogger wrote in their blog, when you become unable to reliably and consistently do things, you start to let people down and they lose trust in you. In my case, I lost trust in myself. I don't really trust my body to be there for me in a reliable and consistent way, because it generally is not. Building a better relationship with my body is a WIP (work in progress).
Another aspect of the anxiety is that because my life is unconventional for someone my age, people judge me. Ever since I got sick as a child, I have been negatively judged... by my peers, their parents, my family's friends, random family members... work colleagues, perfect strangers... and the big one: the medical profession. When you experience the criticism and judgement from a young age, it's formative... it starts to form part of your world view. This became a problem for me because it made me socially anxious. I went from being a confident, outgoing child/person to someone who struggles to cope with socialising. Of course, when you add on how sick you feel, that makes socialising even less appealing and my solution has been, to some extent, to avoid. I found it easier to remove myself and avoid social situations than to have to be assertive and end up rowing/having cross words with whoever it was who thought it would be a good idea to judge/criticise/invalidate me.
As I knew this was a problem, I started to tackle it again (I have bouts of facing it) by signing up for courses where I would have to walk into rooms full of strangers and somehow manage/cope. At least one of these courses is profesionally important for my career development, so there has been a real motivation to actually manage to do it. In doing so, I signed myself up for a big bout of anxiety... you have to almost go through it, to come out the other side. So after I experienced this awful anxiety from Sunday/Monday through until my first new class on Wednesday, I decided I needed to do something more direct about it. It felt very out of control and unpleasant to be so worked up about something, that should not be so stressful.
I was wondering what I could do to help myself to become more confident in my own abilities and to be less reactive on a sub-conscious level about the things that I find difficult - new situations, talking to strangers, using the telephone... anyway, aside from deciding to challenge myself to face them rather than just avoid, I went to Long Melford for the afternoon, and popped into the bookshop there. There was a shelf of books about various, I guess, self-help and religious themes, and one stood out:
http://www.amazon.co.uk/The-Mindful-Manifesto-noticing-stressed-out/dp/1848508247/ref=dp_ob_title_bk
It has mixed reviews, but so far I am enjoying it. Mindfulness is not a new concept to me, but is also not something I have managed to integrate into my life effectively... yet. I am working on this area now. I also bought another book along the same theme, which I can't remember the name of, but will read after this one.
General update:
For anyone following my LDN journey, I am still taking 3.5 mg of it and will be looking to increase that in early July. I would like to increase earlier, but I daren't because I am committed with studies until then and I really need to pass the course I am taking.
I am still taking random supplements when I remember. The best one is high dose Vitamin C, and also Vitamin D too. I really need to take the Vitamin D because not only have I been severely deficient in it in the past, but when I started trying to go in the sun without any sun protection for a bit (to allow me to actually get some Vitamin D), I ended up with a lesion on my face!
Another reason I think I have been feeling a bit better is because I started juicing again: green juice and eating a lot of salad, plus some 'slaw' and fruit, as I need to increase my raw vegetable and fruit intake again. I find that it does make a difference to the way I feel, especially the juice as it is quickly absorbed.
I am debating about whether to try the Bob Beck protocol, but at the moment I am holding out because I have a feeling that it would make me a lot worse before I started to feel better, and with the things I am committed to doing at the moment, feeling worse would be a disaster. The other thing that concerns me about it, is how I would take LDN. You are supposed to come off all prescription drugs (thyroid supplement is okay as it's a hormone) while doing the protocol and be careful about consumption of various foods. I have a feeling I could keep taking LDN if I took it straight after one of the things you have to do, but I need to check into that. I would like to give it a try, as some people have had good results with this type of protocol, but I am also conscious about not making myself permanently worse - for me, my current baseline as it stands is bearable, but not over-useful... and if I were worse, I would struggle to do anything. As my aim at the moment is to go back to self-employment, and run my business, I really need to aim for more ability, not less. So we shall see...
 |
| Green juice anyone? |
Another aspect of the anxiety is that because my life is unconventional for someone my age, people judge me. Ever since I got sick as a child, I have been negatively judged... by my peers, their parents, my family's friends, random family members... work colleagues, perfect strangers... and the big one: the medical profession. When you experience the criticism and judgement from a young age, it's formative... it starts to form part of your world view. This became a problem for me because it made me socially anxious. I went from being a confident, outgoing child/person to someone who struggles to cope with socialising. Of course, when you add on how sick you feel, that makes socialising even less appealing and my solution has been, to some extent, to avoid. I found it easier to remove myself and avoid social situations than to have to be assertive and end up rowing/having cross words with whoever it was who thought it would be a good idea to judge/criticise/invalidate me.
As I knew this was a problem, I started to tackle it again (I have bouts of facing it) by signing up for courses where I would have to walk into rooms full of strangers and somehow manage/cope. At least one of these courses is profesionally important for my career development, so there has been a real motivation to actually manage to do it. In doing so, I signed myself up for a big bout of anxiety... you have to almost go through it, to come out the other side. So after I experienced this awful anxiety from Sunday/Monday through until my first new class on Wednesday, I decided I needed to do something more direct about it. It felt very out of control and unpleasant to be so worked up about something, that should not be so stressful.
I was wondering what I could do to help myself to become more confident in my own abilities and to be less reactive on a sub-conscious level about the things that I find difficult - new situations, talking to strangers, using the telephone... anyway, aside from deciding to challenge myself to face them rather than just avoid, I went to Long Melford for the afternoon, and popped into the bookshop there. There was a shelf of books about various, I guess, self-help and religious themes, and one stood out:
http://www.amazon.co.uk/The-Mindful-Manifesto-noticing-stressed-out/dp/1848508247/ref=dp_ob_title_bk
It has mixed reviews, but so far I am enjoying it. Mindfulness is not a new concept to me, but is also not something I have managed to integrate into my life effectively... yet. I am working on this area now. I also bought another book along the same theme, which I can't remember the name of, but will read after this one.
General update:
For anyone following my LDN journey, I am still taking 3.5 mg of it and will be looking to increase that in early July. I would like to increase earlier, but I daren't because I am committed with studies until then and I really need to pass the course I am taking.
I am still taking random supplements when I remember. The best one is high dose Vitamin C, and also Vitamin D too. I really need to take the Vitamin D because not only have I been severely deficient in it in the past, but when I started trying to go in the sun without any sun protection for a bit (to allow me to actually get some Vitamin D), I ended up with a lesion on my face!
Another reason I think I have been feeling a bit better is because I started juicing again: green juice and eating a lot of salad, plus some 'slaw' and fruit, as I need to increase my raw vegetable and fruit intake again. I find that it does make a difference to the way I feel, especially the juice as it is quickly absorbed.
I am debating about whether to try the Bob Beck protocol, but at the moment I am holding out because I have a feeling that it would make me a lot worse before I started to feel better, and with the things I am committed to doing at the moment, feeling worse would be a disaster. The other thing that concerns me about it, is how I would take LDN. You are supposed to come off all prescription drugs (thyroid supplement is okay as it's a hormone) while doing the protocol and be careful about consumption of various foods. I have a feeling I could keep taking LDN if I took it straight after one of the things you have to do, but I need to check into that. I would like to give it a try, as some people have had good results with this type of protocol, but I am also conscious about not making myself permanently worse - for me, my current baseline as it stands is bearable, but not over-useful... and if I were worse, I would struggle to do anything. As my aim at the moment is to go back to self-employment, and run my business, I really need to aim for more ability, not less. So we shall see...
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