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Yesterday we went out to The National Glass Centre. I have been really struggling mood-wise (and physically as usual) since Xmas/New Year. Mostly I think I have just been in recovery from the festive period but I have been surprised by my little depressive bout, as I have been fairly stable lately on that score.

Anyway, I have been resting up and struggling on in equal measure and just feeling more and more trapped in the house so I decided the time had come to prioritise mental health over physical (a.k.a “to hell with the consequences!”) and do something fun. My partner reminded me that apart from going away over Xmas (involving travelling by car, being in a different house for a few days, then coming home – so not really giving the feeling of getting out and about, strangely) I had not been anywhere except the odd health related appointment since November when we went into town. That explained a lot.

It was great, a bit of detail can be found here.

I feel so much better today (granted physical payback has not really hit yet). I am buzzing with enthusiasm for creative things, and feel much happier. Just managing to go gives me a renewed sense that fun things are possible every now and again, and need not be stressful if they are the right size of outing in the first place.

I am hoping that the flurry of snow that fell this afternoon does not mean we are going to have a repeat of December’s weather, as I would like to leave the house again sooner rather than later!

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Well, for the first time in a VERY long time i had a proper night out! I have been out for a meal once in the evening in the last year with a friend, but it was a very early meal. I have been out for some afternoons but am usually home by 6pm. The last time i can remember being out late is my sister’s wedding: May last year. So this was a big deal!

My partner goes out to concerts sometimes and when buying tickets always asks me if i think i could come. I always say no, as previous attempts have resulted in trauma at the event, or more usually a wasted and expensive ticket. This time i thought maybe it was possible as i was feeling a bit better at the time of booking. Also with the new wheelchair i would hopefully be more comfortable/supported and have less pain during and afterwards. The venue is nice, familiar, small and accessible. Plus we got one ticket free as a disabled person plus carer so there was less pressure. All good.

The day before yesterday i felt really awful, very dizzy and light-headed with the weakness that accompanies that POTS state. I was in bed most of the day. Yesterday i woke up feeling better but still spent the morning in bed and did as little as possible until getting ready to go out. I felt ok and it was so nice that my body was co-operating.

The concert was really good. I did not find the noise too loud as the acoustics are great at the concert hall, it is a clean sound. The last concert i went to was in an arena and it was so loud and bad quality that i was actually reduced to tears – it was so painful and i could not believe all the other people there looked fine and like they were not noticing anything wrong! I did manage to stay (just) but i found it very uncomfortable. I knew this time would not be the same but i took ear plugs anyway! I was so pleased to be in the wheelchair as the chairs there would have been no good for me at all. So glad i have it at last.

We had a good view and when Eliza Carthy came on stage i literally started crying (for a good reason this time!). I was suddenly overwhelmed to have made it out, to be there at all. All the good memories/feelings associated with her and the times i have seen her perform in the past came over me in a flood and i just wanted to give her a hug to celebrate seeing her again (of course i did not, if only because the stage looked too high to scale!). After a little cry i felt more able to relax and enjoy the concert without all those feelings getting in the way; more like a normal person would enjoy it, rather than a fun-starved ill person! The lyrics at the start when i was crying were something like: “thank you lord for letting me live another year” and i felt my own gratitude for being able to go to a concert again.

The concert was called “Murder, Misery and then Goodnight”, after a Kristin Hersh album. She was there, as well as Handsome Family, Tim Eriksen, Eliza Carthy and Howe Gelb. It was ” an evening of the darkest twisted murder ballads” which sounds miserable, but they actually sometimes had a darkly comic edge to them, and there were lots of laughs. It was part of an Americana festival and the tone was a mixture of folk and blues/gospel – i don’t know how to describe it; a bit like Oh Brother Where Art Thou soundtrack! There were some great songs where we all sung the chorus and in that small venue it worked really well. A man played a saw, as well as some other odd percussion things and it worked really well with the sinister lyrics. I was amazed!

Tim Eriksen started the concert standing at the front of the stage in a cloud of smoke holding just a tiny battered book and just sang in that real southern style, completely unaccompanied and it felt like being at the theatre! I knew then it was going to be a great night. What a powerful start. He looks like a really interesting artist too, i had not heard of him before but his biography is very interesting and varied and he worked on the music for Cold Mountain and helped teach the actors to sing for it, apparently! You can hear a bit of him here.

Eliza Carthy was just amazing. My partner says that they all lead on a similar number of songs, but it seemed like she had a much bigger input. I think this is because she was able to join in with other’s songs, either to sing or play the fiddle as back up to the lead artist. Sometimes it was clear that this had not been practiced and she just joined in, tentatively at first to get a feel for the chords and song then just went for it – amazing to watch. There was a spirit of just joining in on each other’s songs, having a jam, but some looked more confident to do that than others.  Her own songs often started with just her voice, singing to a light foot tap and it was spine-tingling, then the song would gradually build to full instrumentation. I rarely listen to her music at home (I only listen to a very few select artists actually as i often find it hard to listen to music, and can rarely multi-task – i.e. listening to music is an activity in itself, not a background thing which limits when it can be done) but i am a huge fan. Her talent and what she has done to shake the dust off folk music is admirable. If she is playing near you,  and you are able ,go see for yourself! Even if you are not usually a folk music fan, you will not regret it. Quality like her do not come along often.

I felt the concert was really long, in a good way, I felt that the effort of going was worth it as they gave us so much, so many songs and a great performance. It filled me up with good experiences/feeling that i can draw on for a while. It also gave me some confidence that I might be ok to do the odd different thing while on holiday (coming up in a few weeks) as i have been worried that i will just feel so awful the whole week it will just be a change of walls rather than much in the way of new experiences. We shall see. Anyway, i am so happy and grateful that i went out last night, whatever comes next.

Some good news!

1. I am getting a wheelchair in two or three weeks after being assessed (it was not a gruelling assessment – just a nice woman who had a quick chat and then measured me up!). It is an NHS wheelchair, so it will be on long-term loan to me and they will pay for upkeep/repairs. It will be lightweight and have a headrest and a cushion! I am hoping it will be comfortable.

2. My application for a Blue Badge (disabled parking permit) has also been successful! I think this will be really useful and take the stress out of parking in many situations. It may open up some new options for places to go.

3. The itching has improved. It is still coming and going but is much better and almost as significant is that the night-time (drowsy) anti-histamines i am on seem to be really helping my sleep. The combined effect is that i seem to be sleeping better and my baseline for activity has been raised a little and i feel less manky in general. I have had some really bad days, but in each case it has been one day of payback which i can directly attribute to having done something; rather than just a bad day for no apparent reason. I am liking this new phase very much!

I have left the house a bit more than usual (at least once per week if only for a gentle/brief thing) whereas before i was not going out other than for essential appointments for weeks on end. A big change for me. Things seem a bit more possible and i feel i am recovering faster from doing things. I am still needing to have a sleep in the day, but i am finding it harder to get to sleep until a bit later in the day and am sleeping a little less. Before, I would often get up, have breakfast and check my emails etc. then have no choice but to just crawl back to bed. I feel more alive now. It is not a giant leap, but it is such a welcome break from the drudge of the past year really, which has seemed so retrograde overall, maybe this is the start of a better phase… Early days, it has only been two or three weeks! I know i am getting ahead of myself and am probably overstating the change, but it feels dramatic to me. Fingers crossed this “side effect” of the anti-histamines does not wear off… my mood was really struggling before – the itch was really driving me into depression as it was hard to cope with. I am feeling so relaxed now in comparison and my other pains are better too!

The best things have been going to a local art gallery and seeing the Hokusai print “Wave off Kanagawa” with a friend, and then, a week later, going to Cherryburn with my partner, where Thomas Bewick the local woodcut print-making legend was born. The afternoon at Cherryburn in particular I felt really good and my stamina was good. It was the best I have felt for many, many months. The sun was shining down on us and I felt so lucky to have made it out and to be enjoying a day trip with my partner. It was fun. We even stopped off in a pub for a cuppa on the way home (yes, that is two separate locations in one trip out!).

3. I have some lovely visitors coming to see me over the next few months, some end of May, some Mid-June and then another in August and we are going on holiday with her to a cottage up the coast from here – I am counting the days til my summer holiday! I did not think I would be able to go anywhere this year as I have been finding travel impossible, and also the itching has really limited my ability to sleep anywhere but my own bed (if i am lucky) and i cannot go anywhere without a bath, as showers are also a big no-no. I am still a little concerned about it as my skin is so sensitive to “lumpy” mattresses (and a million other things), and painful even if not always so itchy, but things are much better than they have been and now i think i will survive. We will be close to home anyway if things go wrong, but far away enough to feel like it’s a holiday!

4. I continue to be able to read and have just read The Colour Purple, by Alice Walker. It has sat on my shelves for over a decade and i am so glad i decided to read it at last! So well written, interesting, moving and grounding. I loved it. I have also bought two books in a second-hand shop (it was so great to be able to go in and browse them last week on a quick trip out!). Lolita, by Vladimir Nabokov who several people tell me is worth reading but i have not read anything by him before, and The Lovely Bones by Alice Sebold. I don’t know which to start with!

5. Just remembered another good thing! I am doing more drawing. I have been inspired by Michael Nobbs and his “75 ways to draw more”. The results are a bit mixed but at least i am doing something rather than waiting til i feel good enough to do something i think i actually “good”. A few minutes here of there can produce something, and something is better than nothing! I am being brave and posting them onto Flickr, as there is a “75 ways…” group there. I have had some nice comments from people who are evidently much better at drawing than me, which is generous of them!

So in summary, life doesn’t feel so bad at the moment, long may it last.

Well, my week is over, my mum has been and gone and it has been a good week overall.

Having my Mum here really helped me to be able to do the odd thing as i realised on the first couple of days before she arrived, doing everything for myself  and the odd household task (washings etc) can really sap my energy and i can overdo myself before i know it, especially if i have not slept well enough. Just having someone there to wash up and do some jobs for me made a big difference. Also although having someone here is tiring as i am talking etc and maybe going out more, it also helps me to relax and enjoy the day and helps time pass, which has the opposite effect. We did not do anything major, but we did go to a local lake and sat there for a while and i took some photos, we had our massages, we went to a garden centre and also visited a friend for a cuppa. So all in all a good few days.

Yesterday i was on my own and got all my jobs done, so today i rested all day and then went out into town briefly to a shop (where i pointedly asked if there was a chair without something on it that i could SIT on! The lady was very obliging and moved some wares elsewhere) and to a cafe to meet some people. I stayed for over an hour before i felt very light-headed and came home. I really enjoyed it though and it was good to have got out despite being home alone. I am just winding down now and hope i sleep tonight so that i can recover quickly. My partner will be home tomorrow evening 🙂 I have missed her!

Next week we have another visitor, a good friend is coming to stay, so in effect i have another staycation next week! Not bad eh? No firm plans but hope to go for a picnic somewhere if the sun shines – at least i will be able to eat it if we take our own food! Also planned is a game of scrabble – we can take all week to play it after all – can’t wait! I only wish my dictionary was a bit lighter as it makes my arms ache!

Well, it seems there are several things going on so here’s a little update on each:

Haircut! I managed to go out on Saturday into town by taxi, to get my hair cut. It is so nice to have a proper cut as i have thick short hair it soon grows out of style into a mess, and i cannot be bothered/do not have energy to be styling it every time i get out of bed (two-three times a day!). It had been over 12 weeks since i last had it cut! I had a really nice friendly taxi driver and he took me both ways and my hairdresser was chatty too. This meant i had about two hours of conversation. I felt very lightheaded at times and knew i was overdoing it, but i REALLY enjoyed it, and being sociable 🙂 I coped ok in the salon with the noise, busy atmosphere, lights and music. I was nice to feel i was doing something in the “normal” way.

D-Ribose: RachelCreativeis back on her D-ribose, but after my three week trial i really cannot tell any definitive difference in my symptoms, although there is a lot of other things going on at the same time. I am stuck between wanting to be at my best for my sister’s wedding in 3-4 weeks so taking it just in case it helps even a little, and really not being bothered with it – particularly as i am experimenting with my diet so much. I would rather reintroduce a “new” food than introduce d-ribose and wait to see if it has any effect on my digestive system… so i think i am not going to take it for now.

Midodrine/POTS: It has been two weeks since i started to increase my dose of Midodrine. It has definitely been easier than last time i tried, with less nastly side effects. I think this is mainly due to the times i am taking it: more spaced out through the day… although i am going to try to continue upping the dose gradually a little more yet over the next few weeks. In general i think i am feeling a little stronger on this new dose as well, though my evening head and neck tension/pain has been worse. I hope this will ease off again. I may just be feeling stronger due to my digestive system improvements, who knows…

I am still getting some POTS symptoms, which i was reminded of yesterday when i was driven by my partner to a local small shop (5 minutes away in next village). I just fancied a little trip out of the house and felt ok. I walked up a couple of aisles and got what i wanted, then when standing at the till (there was a short delay as something went wrong with the items going through the till) i found myself really struggling to stand there. I sat on my walking stick seat which helped a little but just this small thing meant i had to go back to bed when i got home as i felt awful. It was partly due to “payback” from going out on Saturday to get my haircut, but still felt very much like the start of a POTS episode… there are definitely times now where i would be fine to go to a shop for ten minutes and pay at the till, but i still have to time it right and am often not as good as i imagine i will be when i actualy do it! It is easy to think i am SO much better when i am sitting at home, but in reality most things are still difficult. Baby steps…

IBS & the diet: The new diet is going well. After the fourth day of diarrhea after eating the oats, i took one Immodium (loperamide) tablet as i could not deal with it any longer and seemed to be losing weight fairly rapidly. After taking the tablet things have been much better and seem to have settled into a good pattern. My stomach is still achy and painful on occasion, but i think getting better every day. I am gradually introducing more things into my diet that “should” not cause any problems and so far so good.

I have eaten soya yogurt products, more ground nuts, fruit and seeds ground and cooked in my morning porridge, oh yes! gluten free porridge (rice and millet), avocado (my first raw fruit!), butternut squash soup, choc soya pudding, cornflakes, seed butter, rice pasta, a small piece of gluten free orange cake 🙂 …. and probably more new stuff… it has involved going to the supermarket and buying “special” products which can be pricier than the usual ones but i would not really have to do this if i was not going gluten free at the same time… after the oats i am being a bit careful about this issue, especially as my Mum finds she cannot eat gluten.

I have still not eaten any gluten since the “oats drama”, nor have i eaten any dairy products except a bit of egg in the cake. I am cooking rice and potato etc fresh and not allowing to cool (due to the potential resistant starch issues.) I am limiting very high fibre foods, or cooking small amounts of them well and mixing into the safe foods. I want to try some cheese at some point, but am not really missing the yogurt now that i am eating the soya version – just as nice.

I also want to try a bit of low fibre gluten/wheat products and see if i have a dramatic reaction like i did with the oats… i think i will wait a bit longer as things have only been going well for a few days. I need to try it out before my sister’s wedding weekend, but also with enough time to recover before going! Otherwise i may not be able to eat any of the wedding food! As a vegetarian, cheese sandwiches are staple fare at such times after all… finger’s crossed the oat thing was just a one-off, and not a sign that gluten in general is no good for me. We shall see…

Back exercise: I have been forgetting to do my back exercise recently, tut tut! I am still trying to do it though and will try harder! I think that because i am having more pain in other areas (shoulders, headaches) i am more focussed on that and don’t feel like lying on the floor and striking the pose… no excuses though!

Going out: I am going to try to go out on Friday early evening for a couple of hours to be sociable with a group of people in a cafe… cross your fingers for me to feel up to it?

Well, i have been really enjoying the sunshine recently! I am currently sitting on the doorstep with my jeans rolled up, my forearms out and my face and neck exposed also. I have decided to make sure that if it is a sunny day i will make sure that i sit outside in it for ten-fifteen minutes at least, in order to get my vitamin D for the day. I had a quick surf on the net and it seems this is all that is required.

I have not read into it fully but i am aware that there is research on ME and Vitamin D deficiency going on, so i think i may as well do what i can, just in case it helps! Also there is osteoporosis in my family, and i am a vegetarian so i may not get as much in my diet as other people, although i read that it is hard to get enough just through diet alone anyway.

Of course, i hope to sit out in the sun for longer than this over the summer but i may well cover up and wear suncream for any length of time much over this amount, especially in the height of summer, as i don’t think getting sunburn is fun or a good idea! It is good to know that something so simple can allow me to get enough vitamin D (assuming people with ME can make it the same as others do…). Knowing the climate i may have to seize the moment some days as you never know when the sun will go in in this country!!

Yesterday i definately got my quota, as after over two weeks of living in a cold virus ridden household (first my partner, then me) we both felt better and went out for easter sunday! It was warm and there was not a cloud in the sky. First we went for some lunch in town, but it felt so wrong to be inside, so we relocated to park, then a nearby pub garden and sat in the sun playing cards for a couple of hours! My back got quite sore from strange and unsupportive seating (despite having my cushion with me!) and i was exhausted when we got home but seem to have come off relatively unscathed after sleeping almost continuously until 1.30pm today! It was so nice to spend time together relaxing and to be out of the house and feeling good after some very tough weeks (before we got ill was very busy and i was not feeling well at all).

Hurray for the sunshine! AND after my mum came to visit and did lots of work in my garden (thanks mum!), and i planted some seeds, some are coming up today! I think it is the miniature marigolds… ahhh! Let’s hope the slugs and snails don’t fancy a snack before they get a chance of life. Fingers crossed for the californian poppies as well, then my garden will be a sea of orange flowers this summer 🙂

Well, i said i would go out of the house somehow to mark my birthday, and i did. We decided Saturday was the best day for a number of factors (weather forecast, likely traffic due to Newcastle v Sunderland football game on Sunday etc), but i woke up feeling very dodgy and my partner’s assessment that i looked “a bit pale”, when i looked in the mirror, was a hilarious understatement. (Good to see those low blood pressure tablets working… NOT!). So, we crossed off the most ambitious option which was to drive to Sunderland to the National Glass Centre (best done in daylight as never been before and it was already late morning) and i got back into bed. I managed a bath in the afternoon and booked a taxi for 4.15pm, as i was determined to do something out of the ordinary. We went to the Laing Art Gallery in town (Newcastle) to quickly (It closes at 5pm!) see Tracey Emin’s Seagulls. I was happy to find them near the entrance and there was a sofa to sit on while looking at them.

I am not really a fan of hers, but i am conceiving an arty project of my own about birds (I feel it may be customary not to talk about things before you even start them, and for good reason, but hey! i like to live on the edge), which have taken on a greater significance for me recently as my illness has been more severe, so i thought in the name of research i would see what a “proper artist” was doing… We did not stay long and really there was nothing more to see than looking at the picture on the website (see link above). What really struck me was that the seagulls, all made from the same cast so pretty much identical, looked more like PIGEONS! To me the beauty of a gull is in it’s crisp edges and it’s angular elegance in the air; these were all rounded and puffy looking… and to have the same words on each one as well? It could have been more interesting to my mind, but what do i know?

So anyway, we then took a short walk to a bar as we had an hour before the restaurant opened. Firstly the only seat we could get were high bar stools which wobbled precariously and were set next to a wobbly table and i felt all “at sea” and not good at all. I do best with a seat with a supportive back, but this was a whole new level of discomfort! Luckily some people moved and we got better seats and the lights were less in my eyes there too.

Then we took another short walk to the bus stop to get a bus down the hill to the quayside. We did not have long to wait and got to the restaurant no problem. The meal was nice. It was Indian food from the Kerala region. We enjoyed the starters more than the main in the end and it was nice and quiet with only one other table occupied when we arrived, although it did fill up by the time we left. We could have got a taxi to come to the restaurant to take us home but i wanted to walk along the river just a little as it is a long time since i was there, and it is nice at night. So we walked a little bit and got a taxi home from the taxi rank.

sage-being-32

 

 

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When we got home i very quickly deteriorated and had to go and lie in bed for a while, which put a bit of a dampener on things (i walked into the bedroom and looked at the bed which i only left about 4 hours before and it looked like my enemy, which it does not usually) and i was disappointed, although i knew i had pushed my luck quite a lot considering the day started so badly.

I have slept most of today so far and i don’t feel too good now since writing this but i am glad we managed to go out, however much of an effort it can feel. I made my partner take some pictures of me (she refuses to have many taken of her although i did get one) to mark the occasion as otherwise i will probably forget what we did by next year, as my brain is not so good on that front at the moment!

All in all i did have a very good birthday, and what made it good were all the good wishes, cards and great presents people gave me. People have put so much thought into them and that touched me a lot and made me feel valued and special to them. I still have not even found homes for them all – yes i got that many!!! So thanks everyone, if you are reading this xx.

birthday-risotto-parsley-32

(Hmm cheesy, green & nice!)

Special thanks to my partner, who always tries so hard to give a sense of occasion even when i am feeling ill, and who made me a gorgeous parsley risotto on Wednesday for my birthday dinner even though she was dubious about the concept, but we both loved it after all!  She got me a digital photo frame, which i love despite never wanting one before i got it and is so nice to have on when i am just sitting quietly, and a love-at-first-sight wool top! Here i am wearing it. Me, aged 32…

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Well, this week has not been good. I have not been really bad, but not well enough to do anything much for long. Some days have been as bad as ever, seeing a return of bad upper back pain and regular headaches among other things. I have had to sleep a lot and have just not felt much sparkle…

Yesterday i went to see the CFS specialist again. He suggested it may be the medication causing this down-turn as he says it is generally not well tolerated (The POTS specialist did not say this to me, who is right?). Up til then i was thinking maybe i was fighting the nasty virus my partner has had all week, but i take his point. Maybe i just didn’t want it to be that, but thinking about it, it makes sense. I have had more problems with temperature regulation again, including goosebumps when warm (particularly on my thighs) and cold feelings on my head when my body is warm. Also a difficulty getting warm, followed suddenly by being over-hot and sweating. Goosebumps is meant to be a side effect, paricularly on the scalp so it kind of follows.

I am going to give it another couple of weeks to see if things improve as my body gets used to the new dosage as it was three weeks before i was sure it was having a positive effect intially. If no better i will ring the hospital and see what they suggest. After the initial success, i don’t want to give up on midodrine too early.

Although i am not hideously ill, i feel pretty much as i have pre-medication which is disappointing. What seemed “normal” has now become “worse than expected” , as i got my hopes up, which is not a good way to see it mood-wise. But i am well practiced with patience and i am trying to just see what happens. I really want to go to a lecture on monday evening that the POTS specialist is giving, and it is my birthday during the week so would like to be able to do something outside the house next weekend to mark the occasion. What we attempt will depend how this week goes… my short-list is:

  • Lunch/afternoon tea at a fancy hotel/country mansion type place up the road (easy ten mins drive for my partner) where i have not been before
  • Go into town to the arts cinema, with optional meal out afterwards if stamina allows
  • Go to National Glass Centre in Sunderland – this is a very long shot and the meds would have to kick in big-time as it is quite a drive and would need to be pushed in wheelchair etc etc – but no point ruling it out til the time comes as I have wanted to go there for years and have never been. There is a really interesting-looking exhibition on called Beautifully Crafted (see above link).
  • Also in Sunderland are the Winter Gardens, which again i have not been to, but i could never do both things at once… it is winter though so must be a good time to visit 😉

Or i may have other inspiration in the week, who knows! I hope i can do something anyway… If not i could become old AND grumpy overnight!

Also, to throw a spanner in the works, my partner has been ill with a virus all week and is still not tip-top, so it will depend on how she is doing by then as well… fingers crossed… again!

ME/CFS Awareness

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