Last week I had to move out of our house while two rooms were plastered. To stay would have meant being shut in one room with my partner (who would be trying to work from home and deal with the workmen) and the dog from 8am all day for at least three days. That would mean no bed (the sofa is not actually comfy to lie on for any length of time) and i cannot last a day without lying down, usually twice with at least an hour’s proper sleep… and that is when i have not woken up til about 10am, never mind before 8. Add to that the mess, noise and dust and you can imagine how relaxed that would be. It was not going to work. So i abandoned ship which helped my partner who then had one less thing to worry about/deal with.

A good friend of mine agreed to take me in and i went to stay with her. I took a big batch of veggie stew and microwave rice, microwave porridge, various snack foods etc so that i would not have to depend on her (she would be out at work all day and then busy with her baby anyway, so did not need to be looking after me too). I ended up staying from Sunday evening until Thursday afternoon and i really enjoyed the change of scenery.

I was mostly on my own and apart from the Monday just used my energy and time resting, having baths (daily due to itching issues, that will be another blog post, (maybe) coming soon!), making food etc. It was nice not to be at home where there are always more things to do. I felt more relaxed i think as I could not get caught up in little household chores or other stuff that tends to creep into a day at home. I was barely on the computer (i did not take mine) and watched no TV (there wasn’t one). It was nice and quiet.

The Monday I actually went into town and to THREE shops (and a cafe for a rest mid-way). Yes, what was i thinking? I rested in bed before and after the trip and expected it to be a bit traumatic, but actually it was a pretty good experience. It was something i had been really wanting to do for months but not feeling able. I really could have done with someone to help me carry my purchases as my arms/neck/shoulders get very tired carrying the smallest thing for any time and it was a struggle at times, but as i was very careful in the days before and afterwards i did not suffer too much for my exertion, just extra aches and pains really. I sat down when i could and asked for help as much as possible in the shops and people were very helpful. The great thing was actually being able to go and buy some undies for myself. There are a lot of things that are ok to have someone else buy for you, or to buy online, but clothes are tricky. I really wanted to go and choose my own vest tops and knickers, especially as my skin is so sensitive and itchy i wanted to feel them and see how scratchy/bulky the seams were, and so on.

I also bought a pair of jeans! They are not a perfect fit so i will need a belt with them (my hip to waist ratio is a little ridiculous so this is expected) but i am so pleased to have found some as who knows when i will next be able to go clothes shopping and my existing ones seem to be getting a bit thin in places (you only really need one pair of jeans when you live in PJs, but it is so distressing when your jeans rip and you have no replacement at the ready).

I really think it is about my third visit to a clothes shop this year, i cannot actually remember the last time so it may be even less. It has certainly been a while and it was nice to be out and about, “gal about town”, watching and seeing how life goes on usually without me seeing it. A lot had changed in the two streets i always go to and my memory of where things were was a bit wrong! I still feel like a visitor in this city after 8 or more years of living here. The last time i made it into town was the August Bank Holiday when i went to the art gallery, which was a great day and i am still remembering it fondly!

My friend lives nearer town than i do so it was really easy to get in and out and also she lives near some local shops so i went out briefly for some fresh air on other days and sat on a bench, went to a cafe and a shop as well and it was so much less effort to have it all right on the doorstep. It made me think about what things might be important in choosing where to live if we move house. It is interesting to try out other people’s houses!

Unfortunately on the Thursday afternoon once i got home i felt surprisingly ill and thought maybe i had overdone it more than i thought, so i spent the afternoon in bed. I got up for the evening but kept having bad dizzy spells even when just sitting quietly which is rare now that i am on medication for my POTS. I felt pretty bad but thought it was just the usual payback. I went to bed and slept a bit before waking up and feeling queasy. At 2.30am i started to be sick and this continued until there was nothing left in me at about 5am. There were breaks in between bouts but i felt so bad that i could barely move or lie down as i felt as if i could be imminently sick at all times. It was not a fun night. I eventually got a couple of hours sleep at about 8am but barely ate on friday (even drinking water was hard) and still had little appetite all weekend, though i gradually built up the amounts i ate and no longer felt that i would be sick.

During that night i was obviously up and down to the bathroom and think i was having POTS symptoms as well. My heart was beating very fast and my arms and legs kept getting pins and needles. The next day i did not take my POTS medication until i had eaten something. I really did not want to put anything in my stomach in case it triggered more sickness. So on top of the weakness and dizziness of being so ill i also had POTS symptoms, all in all it was BAD. I should have taken my blood pressure just to see how bad it was, but was too ill to think about that until later!

So that’s what you get for going out into the world… exposure to viruses! I kind of expected it, i just hope it does not knock me back for too long. From experience this year these things seem to really take their toll long-term. I hope to have some energy by Christmas, if only to digest some seasonal foods! At least i have lost a few pounds through all this, so i don’t have to worry about eating myself out of my new jeans

It is now Tuesday and i do feel much more back to my “normal”, if not very lively. I am still a bit achy (being sick uses a lot more muscles than you would think!) but pleased it only lasted as long as it did. After being away from home, then out of action i do feel i have various things to catch up on, not least the blogging i put off last week to save energy for my trip away from home! Ahh well, hardly that important… you may get some old news at some point!

…but so little energy that i cannot manage any of it.

People, we have a back log!

I read a post by my friend today where she says she wants to pretend to be normal for a few hours, and it got me thinking. She says:

“But also I’ve been feeling this week like I just want one day, or even half a day, where I just get to be normal. Or pretend to be normal.”

Hell yes! I know what you mean. In fact last Friday after three weeks of planning, worrying and not feeling well enough, pacing the whole week before, watching the day itself grind so slowly along while trying not to use up any energy and rest as much as possible; I went out!

I just wanted so much to have an evening of doing something normal, feeling normal (or at least not really ill), having some much-needed fun and by and large i did. I had the best indian meal i think i have ever had and spent time with a great friend. It goes without saying that this was a rare occasion for me (but i will say it anyway) and that i have suffered the consequences since (but it was worth it).

I got dressed up (as much as my limited wardrobe of non-pyjama items allowed). I put on makeup for the first time in ages which felt very odd and like i was pretending to be someone else by hiding my pallor and ill-worn face: yes, pretending to be a well person. I sniffed it warily (it goes off and smelly you know when you only use it once a year) and i was feeling very out of practice.

I also had a big dilemma about whether to take my walking stick…

I quite often have this dilemma about my walking stick. Without it i can pass as “normal”, as able-bodied, though that illusion can soon dissolve and i need to explain myself anyway. If i am going somewhere by taxi and it is door-to-door with no walking or needing to stand and wait outside, and if i am not going to be alone, i will sometimes leave it at home.

Quite often when i don’t take it i find myself in a situation i did not expect and wish i had it with me, though it is rarely a major issue as it is not really a whole lot of help to me if i feel really bad. It has a seat at the top and this can temporarily help me if i have to stand still. Mostly it is a useful signifier to others that there is something wrong with me. People will be more accommodating if i ask for help or make a request to be dropped right outside my house, they will help me with my bag etc. It makes life easier and gives people warning that i cannot walk as fast or as far as they would otherwise assume.

It is nice to feel that i am escaping my ill life for a couple of hours, that i do not stand out from the crowd as a young (ish) person with a walking stick. It is nice not to attract questions and have to explain what is wrong with me to all and sundry and then have to use energy to deal with their reactions and questions. But should i “pass” in this way? In a way i feel that it is only passing due to the assumptions of people i meet that i am able-bodied and healthy, so really the problem lies with them doesn’t it? But i cannot help but feel it is important to make visible that not everyone who is young (ish) and looks healthy really is. It feels like pretending and hiding to deny my disability by not having my stick, even though it is almost useless in a practical sense!

I wonder if this feeling comes partly from my experience as a lesbian – another situation where it can be easier to pass/pretend and rely on other people’s assumptions that everyone is straight. I make a point of correcting people when they assume i am straight (unless i feel threatened, and even then i feel guilty for not challenging them). I cannot divorce my personal actions and identity from their political impact, small as that may be when i am hardly a visible part of society 99.99% of the time. Am i using an unfair priviledge to be able to pass as straight, able-bodied etc?

Should i want to be “normal”? Should i have got over that by now and embraced my disabled identity? Well i would say in many ways i have, but being chronically ill 24/7 with no break is not something that can be embraced and loved at all times – so why do i feel a traitor to the cause? I actually do not even hope to be “normal” again or 100% well (i cannot dare to hope that far, and it seems such a no-no to even speak of it within the disabled community – but hey i am used to not fitting into the club) but a break from it all and to try on a different identity that is more a choice would be nice occasionally… is that wrong?

Am i the only one who even thinks about this stuff?

The last few weeks i have been gradually starting to think about Christmas and how to manage it, and as i have continued to feel not so good lately I was feeling a bit daunted by the whole thing. So I thought about ways around it and came up with this. I have sent it to everyone who may consider giving me something.

I am just posting this here as other people with ME may feel the same way about Christmas and seeing that i am doing this may help you think that there are alternatives that might not hurt everyone’s feelings… I have had two responses so far and both were entirely positive, so i still have one family member and one friend talking to me!! phew!

To all my lovely friends and family,

 As most of you are aware, shopping in shops is not something I can do, and last year I did all my Christmas shopping online. I did, however, find it was still a lot handle as I have to limit computer-time and I also find organisation and making decisions about what to get for people quite exhausting when my brain is not working so well. The hardest part though was receiving the deliveries, as I cannot stay out of bed all day nor can I jump up from bed and launch myself down the stairs without risking falling over or at least making myself feel very dizzy and faint. The memory of last year has made me question what to do this year as I have been going through a bad patch and just cannot face it. ***** says that no-one will mind if I just don’t get them anything, but I was not comfortable with this, mostly because when other people start giving me things I will feel so guilty, and it would feel like I have mislead you all: SO, my plan is to a) let you know early so that you have no expectations and hopefully will not have got me anything yet and b) to propose an alternative: 

I would like to propose that instead of giving gifts we just exchange cards. 

If anyone really wants to give me something (please do not feel obligated), I would really like a donation to MERUK (it can be done via my justgiving page (see link below), it is very safe and straightforward to use). This is a potentially very exciting time in the ME-world. A strong link to a retrovirus has been found in the US and the UK charities are keen to fund studies to replicate and expand this research to find out what this could mean in terms of the development of a diagnostic test, a vaccine and even possible treatments in the (hopefully not too distant) future. It would give me enormous hope to feel part of making that happen and would make me just as happy as getting an actual present, if not more so. More info for those who want it is in the links below.

 If you have a favourite charity, please let me know and I will happily make a donation instead of the present I would have bought for you. If you do not make any alternative suggestion then after Christmas I will make a donation to the ME charity using what I would have spent, so if you have another preference, don’t be shy!

 I hope this is ok with everyone, thanks for your understanding,

Ashy xx

 

My Justgiving page for ME Research UK is: http://www.justgiving.com/jfqashy/ To donate you just sign up for a justgiving account if you don’t have one already, then click to donate. It is easy and you can really boost your donation if you are a UK taxpayer by choosing gift aid. 

The Whittemore Peterson Institute in Nevada that made the HMRV discovery: http://www.wpinstitute.org/  (there are links to articles in the media about the discovery and also some good FAQs about ME in general and also about the retrovirus HMRV and what it could mean. 

ME Research UK: www.meresearch.org.uk (And their reaction to HMRV from their homepage: http://www.meresearch.org.uk/information/publications/xmrvfind.html)

I decided during the last couple of weeks i needed more than just massage to deal with my wreck of a body – the last couple of months i have had much more tense and more painful muscles all over and my upper back became so uncomfortable recently that i had to go to lie in bed in the day just to rest it, as there was no sitting position i could find that worked, and also i had to only lie on my back in bed as being on my sides was became too uncomfortable after just a few minutes… not very helpful when i already have enough problems being comfortable in bed and sleeping well.

I found an Osteopath online who was close enough that taxis would not cost too much, read his website and sent him an email. He sent a lovely one back and his charges were less than i feared, so i gave him a try today.

He was great. He says he doesn’t know if he can help me much at all as osteos rely on the body’s natural ability to heal in order to get better, once they remove whatever is blocking that. He says my regulating systems are so all over the place (the autonomic nervous system which causes so many of my more severe symptoms is very key to this) that he has no idea how it will respond. We are giving it a go anyway and i am sure he will tell me if there is no point.

He had really researched POTS and seemed to know a lot about ME and the autonomic nervous system and i was impressed by his attention to detail and enjoyed talking to him. I think i like him and will enjoy my visits which is important too.

We are focussing on making my back more comfortable/less painful, but he also says my lower back is BAD (i thought it was fine but he says the pain signals must have been switched off as it is soooo baaaad!) and that could be affecting my pelvic pain/bladder/ibs etc so he will try to help that too. My head apparently is all baaaad and solid as a rock, but i knew that, as it is always tense and painful. He spent 2 hours with me, despite me being late (taxi couldn’t find our house… again) and the appointment was only for 90 mins. I felt very spaced out and dreamy afterwards and my back does feel different, if still sore! He was very gentle – it was pure Cranial Osteopathy which is basically minute movements, mostly you can’t tell anything is happening, though he kept making discouraging noises like for him it was all very dramatic and he kept finding more bad things wrong with me! It was quite funny!

He has leant me a support pillow (memory foam?) to “try before i buy” as i was considering it but wanted to test to see if right for me before shelling out mega bucks - and i lay on it this afternoon and it was like a revelation! I could actually feel, when on my back or side, that my neck was perfectly straight and there was no pressure on it! i am sure it will help my neck and comfort levels when sleeping so he ain’t seeing it again I think the amount of time i spend in bed it could really be affecting my neck tension and may help. Hurray!

I will see how it is after i have actually slept on it, as this afternoon i collapsed into bed in a zombie state for three hours when i got home, but couldn’t sleep as such; it was a pleasant waking dream-like state. I actually felt like i was on drugs when in the taxi home; my speech was slowed and an effort but it seemed really funny to me! The taxi driver thought i was being very odd, i could tell, but i thought that was funny too! We had a surreal conversation about the weather…

The Osteopath also recommended a very expensive week-long probiotic treatment, which i will look up online, but may not jump at that quite so readily! Will see how things go…

I went to the hospital today to see the POTS specialist again. I had a good time! I was a bit worried about how i would feel, and considered ringing them in advance asking them to wheel me from the entrance to the ward, as i had to go alone and it was an early appointment again, but decided i would be ok. They have moved and last time when we went to the new location for the first time i felt very disorientated. This time i had to use a different entrance and it was actually better, though a bit of a walk. I have improved a bit the last couple of days so felt ok to walk a bit.

I was impressed with the hospital entrance which had a shop, cafe, starbucks, hairdresser etc and was really pleasant. I thought i would have an easier life if i lived there as everything was so close together and convenient! I went into the shop on the way out just because i could (i miss shops, not that it had anything i wanted really).

Anyway, so the apppointment: I saw her early as the person before me did not turn up (a “DNA” – i had not heard the term for ages and it took me a few seconds to realise she meant they had not rung to cancel: “Did Not Attend”. I like the term – good for medical appointments!), so she had extra time to spend with me which was good as i had a few things i wanted to talk about.

I told her that apart from the first few weeks this three month period since i saw her last have been pretty hard, probably due to the virus i had which i have not really got over… at least i have not regained the levels of energy or strength i had before that. She asked about my typical day again to identify any peaks and troughs in function to adjust my dosage to help me through the low points. She suggested taking a higher dose first thing, staying the same at lunchtime and re-introducing the late afternoon dose which i am pleased about as i seem to have a big slump late afternoon. So that was the POTS stuff done really, she commiserated me on the virus situation as the same thing happened in the period before i last saw her. Hopefully i can avoid catching any more and maybe experience more of the glimpses of feeling stronger that i have had between these long running lows. There HAVE been times where i have managed to do more, feel better in myself and bounce back quicker, but is it hard to remember them after so many weeks that feel like regression almost to the old days before i even got POTS treatment.

I also wanted to talk to her about my pain and discomfort issues. The last few weeks my muscular pain and tension have been particularly bad. I have had to lie flat on my back a lot more (which i forgot to say) just to rest my upper back as i am having trouble sitting comfortably, even in my one comfy and supportive chair in the house. My skin has been very tender and painful to touch, particularly in areas where my muscles are rock hard underneath. I have been having regular massages which have helped a little bit, but only in a very temporary way. I have also made a bit effort to stretch the worst areas every day, which feels good immediately afterwards and i am sure had helped, but again not dramatically. 

I have also had an increase in skin itching and sensitivity, which may or may not be related to the increase in other pain, as well as more pain/discomfort from my already sensitive bladder, meaning that i feel a continuous feeling of needing a wee, especially in bed when lying on my side or when there is any clothing pressing on my stomach. The itching is also worst in bed and we now only have one sheet i can sleep on that does not cause itching, despite the others feeling quite smooth to the casual touch. She thinks the itching is probably just another symptom of my automonic nervous system not working right. She has previously given me a blood test to investigate the itching so there was nothing else to do really.

She gave me a CK blood test to see if there is anything going on with my muscles. While i do not want this to come back positive (after a quick internet search!), I am so impressed that she takes everything seriously and does not just dismiss it as a typical ME symptom and adopt the ”what do i want her to do about it” attitude of most other doctors i have known. I am reassured that if there is something she can check out she will. As usual the taking of the blood was painful, as when a needle is inserted into my veins typically nothing comes out, and today was no different. I warned the nurse before we started and she said today we might be lucky, i said i doubted it. It is like my blood is just sitting there and not going around my body with any force at all, which explains a lot. So it needed to be wiggled and a very sharp pain shot up and down my arm and persisted long after the blood was taken. Ouch! I am used to that though and am not really bothered, though it did make me a bit flushed in the cheeks and lightheaded. She also tested my urine to see if i have any infection but that was negative.

She said there is colleague who does work on muscles that i could see but i can’t remember if that was if the test comes back positive or negative - i am not sure what he can do for me – we moved on quickly to talk about other research she is doing on muscle function and ME and she asked me if i would take part (yes). It involves a muscle biopsy but she says it is pretty much like having blood taken, and seeing as that is usually painful for me i think i will cope with it. Not sure when that will happen. She seemed surprised i am so keen to take part. I am just enthusiastic to do anything i can to help with much needed research and it is good to feel i am doing something worthwhile with what limited energies i have. It is something i CAN do. Plus i like going there, it may seem sad but it often feels like a social occasion. I have known them for over a year and seen them as often as any real life friends this year! They are friendly and take time to chat. It is nice to have some social contact and be out and about.

I have made an appointment with an osteopath for Tuesday as i really need to try something new with my upper back problems in particular, although they don’t just treat backs. I am hoping to also get advice about stretching my problem areas, even strengthening them perhaps, or am i getting carried away here? Also i wonder if my pillow is the right one for me (i am constantly fighting with it to get it fluffed up to the right depth) and if he can advise me on sleeping arrangements, seeing as i spend so much time in bed. It may be making my shoulders more painful if lying on my side is putting too much pressure on them, and it has been too painful to lie on my side much lately, but i do prefer it so maybe a higher pillow (tempur?) would be helpful, but i don’t want to spend a fortune on a fancy pillow then it be no help.

My partner is away for the next few days (though she seems to be coming down with something this evening so we will see what the morning brings - virus alert!). It is the last planned trip she has this year except one overnight trip which should be ok. I am really pleased about that as i don’t think these periods of self-care have been kind to me when i am already struggling. The compound effect of several days alone can really have a big impact on me and take some getting over. Apart from the Osteopath appointment i have nothing much happening while she is away, and i am feeling ok about it now that my pain levels are gradually improving. Maybe in a few weeks i can actually have some spare energy to do some of the creative things i have on my list, as recently i have been just doing the bare minimum in daily tasks and i am getting a bit frustrated. Where is the fun? Where is the creative sparkle that makes life worth living? I have been limited even in computer time, tv time and reading abilities… this blog post may be a sign things are improving! Woman can not live on stretching and resting alone.

Well, it has been about a month since i went for the big day out to the art gallery etc, and i have been feeling pretty jaded since. I keep waiting to pick up again, but think the big day out (technically speaking - half day!) so soon after the virus (which had not completely gone) was maybe an error, not that i would do it differently if i had the chance again. I have just not regained my previous energy levels. Last week i had to cancel my hair cut and although i made it this week (after resting as much as possible all week) it was a real struggle to be up and functional for the 3.30pm appointment. I really wanted to get out of the house, but was not really well enough. I have felt worse at such occasions but it felt like an endurance test to sit there and listen to the chit chat for an hour. I was so pleased not to be home alone when i got back as i felt pretty dodgy… my IBS has also been flaring up despite my diet being plain and predictable – i suppose just not being so well means it plays up, but that makes me feel worse too.

A friend of mine had invited me to join her in Scarborough this coming weekend. For the last couple of weeks i have been feeling far too ill to go but really trying hard to recoup some energy in the hope that i could miraculously pull myself together in time. Yesterday’s hair cut experience has made me decide not to go. Although it is certainly what i need mentally/emotionally, my body is just not up to it. It is so hard to accept that after having such a successful trip last time. Just sometimes it would be nice to have a fixed condition and be able to say “yes i can do X”  or “No i can’t do X”: to be able to plan ahead and know the score…

Also my nose is running today after a few sneezy days and i am concerned that i am getting another cold! I am doing my nasal washing fastidiously in the hope that no germs will colonise… i don’t think i have recovered from the last one yet

On the up side, being at home this weekend means i may be able to see a friend who i don’t get to see enough, she has invited me over for risotto, so i hope i will be up to it! I will be home alone Thursday – Tuesday, so will be using my energy on essential tasks again, so a fun but relaxed evening with good company will be good to break up the time.

I did get two presents in the post this week, which was really lovely and a big surprise! Sometimes things happen just when you need them and sometimes they don’t – i am grateful for the things that do…

The friend who was going to Scarborough decided not to go this weekend if i am not, so maybe we can rearrange it if i perk up again… finger’s crossed eh?

Quote from Duncan Bannatyne in today’s Observer Magazine:

“I can’t be bothered getting ill – life’s too good”

Yes, Duncan, that’s exactly how it works; and yes you are so much of a better person than me. Wow, if only i had your attitude and lust for life…

Quick update on what i have been up to since my cold…

At the Bank Holiday I felt recovered enough to go into town for a trip out with my partner, as it was her birthday approaching and we wanted to do something to mark the occasion. I felt a bit dodgy in the morning and we did not manage to leave the house until well after two o’clock, but we had a great time! We went to an art gallery (see my post on my energysparks blog about it), then to the new City Library as we had not been inside and everyone was talking about how great it was – and they were right. Then we had a quick drink in a bar and i made the spontaneous suggestion that we should stay in town for a meal (i have not eaten out for many months due to my strange dietary requirements so this was a risky idea not just on energy grounds) so we went for a chinese meal as well! We were out for four and a half hours, and although i did feel quite light-headed in the art gallery and had to frequently sit down, i felt good and even felt ok once we got home, which is almost unprecedented, particularly as i get a bit ill in taxis or with any travel. Of course i have paid for it a bit since (as i was not really over my cold either) and have had a few days of feeling less well, which is why it has taken over a week to blog about it. Still it was worth it and to be able to feel so good and spend such quality time with my partner was a treat in itself.

Since then i have also been a bit creative and made a card – see energysparks again!

Well, yes. I had a great week with my friend who came to stay. My partner was at home most days too and although we all felt a bit dodgy at various times for various reasons we managed to go out and about a little bit, but mostly just spent quality time together. I was beaten two games out of three at scrabble, we ate lots of Wensleydale (it’s a regional UK cheese for those not in the UK), sat in the sunshine (it was a cloudy week overall but we seized any chance we got!) and had lots of hugs. The biggest thing we did was a picnic in a park where there were us three, plus four other people!! A veritable party in the park!

The downside is that as soon as she left i got a sore throat and a runny nose… this is the third cold i have had this spring/summer and i am not enjoying them! Last year i only had one cold (in winter, which seems only right) and it had been a while since i had had one even then. I used to say that i didn’t get them; that my immune system seemed to fight them off. I used to feel worse than usual for a week or so, but not get proper symptoms, just a hint but it would never fully develop. Of course i used to moan about this and say it would be better if it just came out like normal, as then at least i could say i had a cold and have a reason for feeling so bad – i am now eating my words as having a proper one is definitely worse. It is amazing how annoying inflamed nasal passages can be: My nose has turned reptilian and scaly; my eyes have been streaming from the itchiness leading them to be puffy and small (piggy); and sleeping has been very difficult.

Having said that, i think i have turned a corner today. It is only day four and i do feel a bit better. I slept ok, I have not used quite so many tissues AND i have mostly been able to breathe. Some of that though is thanks to my Sinucleanse thingy, which i ordered online yesterday lunchtime and which came today (!). It is a plastic bottle and it comes with salty stuff that you dissolve in warm water, then insert the nozzle up one nostril and squeeze water into it – guess what? It comes out the other nostril!!! Quite funny actually. After some washing you blow your nose (quite a lot of snot came out the first time!) then repeat on the other side. I bought it because a friend recommended a “Neti Pot” last time i got a cold, which is like a gravy boat for the nose, but the same principal! It is supposed to wash out allergens, viruses etc and reduce the number of viruses you get and the duration they last for - i am all for that, so am giving it a go. I am already feeling the benefit.

(By the way, i also recommend Boots catarrh pastilles for blocked nose, and chestiness too… they are small and innocent looking, but really are the business! Suck ‘em and see!)

Maybe my immune system behaving differently is a sign of change? This theory has been mooted… no sign of imminent ME remission but i will let you know!! Funny though, that apart from the worst day yesterday where i was seriously suffering with symptoms and lack of sleep, i do feel a bit different when i have these viruses. Maybe it is because i expect to feel like someone with ME and a virus on top, so have low expectations, or maybe because i do less due to having a virus but my energy levels do not seem to be significantly lower, in fact, i would say they have been about the same but more consistent through the day; less major slumps and sleepiness and maybe more stamina at a steady level… could be adrenaline-type reaction caused by “having to get through this cold”, or the irritation of symptoms, or maybe i am just imagining it… or maybe there is an immune component to my symptoms even after all these years?

Anyway, i am feeling like this cold will be over in a couple of days and i am just grateful that i have not (yet!) had the frequent nosebleeds of last time which literally drained me of all life-force! By the way,  i recommend you read this about how to stop nosebleeds if you are likely to get in that situation – i found it after my worst one and think it may not have lasted so long and been so traumatic had i known about this before! It is hard to search online when blood is pouring out of you, so click now!