Heart rate pacing and resetting my autonomic nervous system

 

HEART RATE MONITORING TO PREVENT POST EXERTIONAL MALAISE

Recently I have spent time reading about how monitoring your heart rate can help with pacing activities in people with M.E. / CFS - at least with physical activities, possibly not so much with mental, psychological and emotional activities but its a start. There is science behind this and whilst I have read a bit, I have been struggling with my cognitive functioning and reading/taking on board lots of information, so I have just read shorter bits, tried to digest it and gone back for more when I could. Writing this blog is serving a dual purpose both as blog to share but also as a kind of journal for myself, somewhere to keep my information, experiences and progress, so I can put my info together to help me to make sense of things when my brain is struggling to  retain or make sense of things. So I am summarising what I have read and understood here, adding in links for myself and others to refer to. 

A Red Admiral gathering nectar on our Ceanothus bush

Before I start with sharing I want to say that I am not a medical expert and that anyone reading this, intending to try these techniques should  research everything for themselves, look for sound medical evidence if you can find it and discuss with your medical healthcare team ( Dr / M.E. specialist etc) first. I am still reading up around this and attempting to do this all as safely as possible. I do have a background as a nurse and know that I am not doing anything dangerous in the short term - there are waiting times for M.E. clinics and I do intend to discuss this with the M.E clinic that I used to attend, but it could be several months or longer before I can do so. I find that you can generally get good information on this specialist M.E. websites rather than sites designed for people using HRV monitoring for physical fitness. I learned as a nurse that there are many people who have  vital signs and blood results that are outside of normal guidelines, this is not always a reason to panic, but can be a reason to book in a consultation with your health professional just to ensure there are no issues. Guidelines are simply that - guides. I do highly recommend discussing trying any new M.E management techniques with your specialist or dr.

                                                     Love in a mist from our garden 

For anyone new to M.E - we have an intolerance to exertion, even mild exertion ( physical, psychological and emotional) can result in severe consequences in the form of symptoms - generally one of the best known ways to manage M.E is to pace all your activities - literally everything you do - physical, psychological, emotional, all broken down into shorter manageable tasks spread over the day. We are supposed to find our baseline of what activities we can manage daily without causing the worsening of symptoms, this is different for each person and can take a great deal of trial and error to work out. We are advised to stay within this baseline for most of the time and only increasing activities incredibly carefully and slowly, because extra activity can cause symptoms which are totally out of proportion to the activity undertaken.When I mean out of proportion - this can mean brushing teeth or showering can leave a person with M.E feeling like they have climbed Ben Nevis ( a 4000+ ft mountain) or worse. 

Red Campion in our garden

We are advised to "listen" to our body, to help us determine our baseline, so any adverse signs and symptoms worsening should alert us to be aware that we may be pushing past this baseline. Its not easy to do, even after 18 years I still get it wrong. Then you get to a point where you have done well, felt a bit better and in the excitement of feeling semi normal you try to do things that you miss out on doing most of the time, pushing way past your baseline, with awful consequences and "crashes". It has been suggested that heart rate monitoring can help us avoid such crashes, acting as a tool to aid us in keeping within our baseline of activities. This is where heart rate monitoring comes in.

                                                 Red campion in our garden this month

The Anabolic threshold ( AT) is the point at which your heart rate goes beyond the limit where your body starts drawing on reserves which we simply do not have, consequently triggering post exertional malaise and worsening of symptoms. There are several ways to determine your own specific AT using different calculations such as  ones on the various M.E. websites, they do differ slightly. The AT for a healthy person differs from people with M.E, so you do need to work it out using a specific calculation for M.E., it is estimated the people with M.E have an AT that is just 50-60% of a healthy person.  You can sometimes get help to determine your AT through your DR, some people find theirs during cardio pulmonary testing and other tests during investigations into various symptoms that frequently occur alongside M.E, such as POTS. If stuck with this aspect it could be worth discussing with your Dr.

This article explains really well what PEM is, how to calculate AT if you have M.E and using this to help pace and prevent worsening symptoms. Using a Heart rate monitor to reduce PEM

Another article explaining AT and preventing PEM Using heart monitor to prevent PEM 2 There are lots more articles explaining if you google. 

I calculated mine using  different calculations. Results suggested 99, 82.5, 103, 86, 92. I have decided to start out using an AT of 90 to start with and I can adjust this over time depending upon results.

Cuckoo flower amongst wildflowers in our garden this June

At the time of starting all this I had ordered a cheap smart watch to monitor my heart rate as I figured that would do initially, knowing I could periodically take my own pulse quite easily to double check its accuracy. However, as I read more I realised that a reliable chest strap  heart monitor would be a much better idea, this was due partially to reading up on heart rate variability and how this can be yet another tool to assist me. I will discuss heart variability further in part two of this blog as I am still looking into it and wanting to concentrate on using AT first, plus I am also in the midst of a week of cold shower and deep breathing  so cant take on any more. But for anyone with M.E. who is finding this interesting I would highly recommend investigating HRV as well. 

Iris sibirica in our garden this June

The heart monitor I am using is a Magene H64 chest strap (£20) - it has 4 star rating from over 1334 ratings on Amazon so must be reasonably reliable and functional. I have checked the readings against my own pulse taking and found it to be correct each time. Although a couple of times my heart rate recorded on this was 20-30 beats higher than that recorded on my smart watch (which is also reliable up to now), I was not quick enough to check which was correct. There are some issues which can cause a heart rate to be faster than the pulse at the wrist, something I need to investigate. I do have an issue with occasional arrythmias, which has been investigated by cardiologists previously, possibly something that needs further investigation now.

                                                   Iris Sibirica in our garden this month

The smart watch that I am using is a  cheap Blackwatch smartwatch (£20), 4.5 stars reviews from over 5000 Amazon buyers, so guessing its fairly reliable too. Again, my own testing shows its within a few beats when I check my pulse manually. I'm  in the process of trying out a few different apps on my phone alongside the monitors, one for my phone which is Gloryfit - it monitors  sleep, heart rate, temperature etc. For the chest strap I am currently trying 60 beat monitor app where you can type in the heartbeat count where you want an alert to remind you to slow down and rest. I find the alert useful and not too noisy when outdoors. Sweetbeat HRV is the other main app that Im using as it gives numerous readings from the chest strap, including hrv, but I cannot work out how to get an alert when reaching my AT. 

                                                  Stitchwort in our garden last month

There are numerous free apps and a few paid for which can be used. I am interested in a couple of  specific apps, which I'm investigating - WATCHME and Welltory - both recommended by people with M.E. 

 So far this week on days following  where I have kept the total time above my AT to an 90 minutes or less I have felt much less PEM, where on the 2-3 days following  where my heart rate has been over my AT for 2 hours or more I have experienced more PEM and symptoms. Obviously I am only at the start of this new AT led pacing journey, so it will be interesting to see how it helps me. I have discovered that my heart rate frequently seems to be around 120-155 at night whilst sleeping, this can occur for a total of an hour of my sleep/overnight resting time, I may chat to my Dr about this during my next appointment to see if it needs investigating and find out what I can do to help lower it during sleep. I already meditate morning and night, as well as keep stress low, I am unsure what else I can do to help get my sleeping heart rate to normal.

So far this week I have made adjustments based on  when my body reaches its AT, when I brush teeth I go slow, and sit down as it always pushes my heart rate to 120. Even putting make up on, kneeling in front of a mirror takes me to 110, so I now sit on a bed to do it. Showering takes my heart rate to 140-150, so we finally bought a shower stool and I just shower very slowly, sitting down for most of it. Washing or drying my hair both result in major heart rate changes, as does anything involving lifting my arms above shoulder height. I change the position of my arms, trying to keep only hands above shoulder height as much as possible. As its summer I will avoid drying my hair ( unless going somewhere special) if it pushes my heart rate over the AT - be prepared for super wavy hair if you havent seen my natural waves! Walking upstairs usually leads to a heart rate around 120-130, so I go super slow and sit down once or twice as I need to. I am using  a stool in the kitchen more and walking very slowly more often as both help keep me within my AT. Lots of little adjustments

Pep Ventosa style image of Bleeding heart plant grown in our garden

Resetting my autonomic nervous system

Another benefit from getting the chest strap heart monitor is that I can also visually see any benefits from all my work on trying to reset or help my vagus nerve, and push my ANS into parasympathetic mode. For people with M.E. who frequently find their body is permanently in fight or flight mode ( sympathetic in the autonomic nervous system ANS)  it may  be beneficial to try to stimulate the vagus nerve which can in return push our body into parasympathetic mode which is rest and repair. 

Physios for ME are currently researching Transcutaneous vagus nerve stimulation in people with M.E. , it will  be interesting to see results. They also have a video regarding Heart rate monitoring  Physios for M.E on Heart rate monitoring 

There are many ways to stimulate the vagus nerve, but do please take care to look into this properly and take all safety precautions. I have been advised in the past to use various methods to assist with my heart arrythmia, by cardiologists, such as plunging my head into cold water and gargling - both stimulate the vagus nerve. Meditation, chanting and singing, spending time in nature and journaling are all thought to help. 

My morning routine of meditation is largely to help me in this area and does often include deep breathing or chanting. So far my apps rarely show any parasympathetic activity, but when they do at least I will have an idea of what has helped. This last 6 months or longer I have been religiously spending 2-3 hours a day meditating, usually a couple of hours in the morning and some time prior to sleep.

This past week I have also been looking into using a TENS machine to stimulate the vagus nerve as well as checking out cold water therapy, ( cold showers) and the Wim Hoff deep breathing techniques. 

 

I am going to try all of these and have already commenced my first week of cold showers - day 2 today, but I will leave discussing those to my next blog/journalling. 

Next blog - Cold showers, deep breathing. 

Update and side effects

 07/07/21

 I have continued on with the protocol as outlined in my previous blog and very slowly increased MCT /C8 oil - but it has knocked me for six - feeling extremely nauseous to the point where I am not managing my full suggested calorie quota every day, dizziness for most of the day, stomach ache and cramps and swollen glands in my throat/neck. Exhaustion is  extreme and energy extremely low, meaning I am managing less than my usual. Brain fog and other symptoms persist. My whole digestive tract is uncomfortable with bouts of loose stools. I am trying to persevere, hoping this will settle down but feeling close to packing it all in as I am pretty fed up with almost constantly feeling worse. But the things keeping me sticking to it are the hope that I have a possibility of improving my health and quality of life, knowing some treatments can result in feeling worse before feeling better , looking at the long term goals - but at the moment I feel that life is passing me by this summer, with me hardly getting out 2-3 times a month whereas before I was getting out 4-8 times a month. Trying to stay positive and optimistic, enjoying our garden, doing meditation and doing some tabletop still life photography.

 Hoping the side effects settle so that I can try a ketogenic diet properly, supported as it is supposed to help a lot of people with energy levels.

 Its all such an expensive option following this protocol with costs for tests, nutritional therapist, about 20 tablets a day plus, oil, and a couple of supplements in powder form added to my drinks and food, then then specialist diet. It adds up to hundreds and so far I have felt worse for most of 3.5 months, it is sapping my mental and physical energy, despite my determination and huge efforts to remain positive, focused and sticking rigidly to it all.

 Whilst my pain is massively reduced and less frequent, this was something we feel we had largely tackled ourselves by working out that the low lectin and low oxalate diet gave good results. Although further advice helped us work out with foods had higher oxalates. The problem is that my diet feels so restricted and is going to be very hard to stick to long term.

I am still incredibly grateful that I have had the opportunity to try this option and have not given up yet. I had to try it - given the chance of getting better.

UPDATE 13/07/21

Another week on and side effects have reduced, glands only a little less swollen, sore throats reduced again, nausea reduced lots, stomach ache comes and goes, loose stools less of an issue, but fatigue and exhaustion are severe, energy is extremely low, hardly managing to keep up with my baseline pacing. Brain fog has eased temporarily for a few hours twice in the last week, other than that remains the same. Struggling to get off to sleep at night but sleeping through apart from when woken by pain from the trapped nerve in my neck.

( Warning below contains open details re menstruation - miss paragraph if you do not like to read)

I should add that the exhaustion/fatigue/low energy could also be worsenned by another health issue that Ive experienced this last month - extreme menstrual blood loss of over 700mls ( measured using a menstrual cup - which apparently equates to around 250 mls actual blood and the rest other fluids)  in the last week which is highly abnormal and has been pure hell! My DR is convinced this is caused by the second Covid vaccine ( she has seen it happen lots to ladies following their 2nd jab) that I had about a month or so ago, this is my first proper period in 6 months as I am going through peri menopause and it has lasted 26 days so far - the longest and worst in my life. Ive had bloods taken to check my full blood count and platelets due to the amount lost - and the bloods demonstrate that I have lost just over a unit of blood since one month ago, but luckily has not tipped me into anaemia - although the receptionist refused to give all the results ( I have to pick them up)  I have been taking iron supplement with vitamin C to aid absorbtion and a diet rich in iron, so I am assuming this has helped - there are other parts to a full blood count and platelet result that give a better picture of what is occuring - I will know once I have the full printed results.. I was prescribed Tranexamic acid to stop the bleeding and it has reduced it.

I know the above is not generally a subject we all talk about openly in public and some may consider it distasteful. However I am an open book and this is part of my journey, it is an important aspect of my health at present and I also feel that other women should be aware of this complication - I was not aware. It can be a scary thing to experience and in my 20 years or so as a nurse, even with two spells of 2 month blocks working in gynaecology and being used to a lot of blood, this still rated as extreme, so to some women with no experience or knowledge  in this area it could feel like they are literally bleeding to death. Its always worth talking to your Dr if you experience anything similar.

 

All in all I have felt utterly dreadful every day of this last week, despite the side effects symptoms easing off. I have stuck to the diet and protocol and now taking 10 mls C8 oil twice daily and 2 DIM daily. My nutritional therapist is aware of all of the above and reviewing later this week.

Hopefully I will start feeling a bit better soon. I have been spending my time at home  with just a half hour trip out locally to pick a few wild flowers, and have been trying to do a little tabletop still life photography, but mostly reading, meditating, enjoying watching wild life in the garden and watching a bit of easy going tv. Despite feeling dreadful I am happy enough in myself and taking pleasure in our garden each day, although really missing seeing people. whilst the UK is getting back to near normal I am still stuck at home and rarely see a soul, but this is the nature of M.E.

We have several visits a day from a group of about 12 Goldfinches with 3 young, its been fun to watch their behaviour and see them enjoy the wild flowers we planted last year.

Positivity

I believe you can turn around negatives in your life and make positive things happen, Ive always believed this and so I have been looking at how I can make positives in my life despite my recent relapse and associated struggles. The first thing that has struck me about having such reduced mobility is how surprisingly, despite living in a country with good transport networks and modern approaches to making transport and facilities accessible for all, just how difficult it can be for a disabled person to reach a destination easily and be able to find facilities that are accessible. With my hobby of photography I am already encountering difficulties holding my camera and the energy to take more than a few shots, made worse with bursitis, I thought there must be others who have the same or similar problems. There is no local group for disabled photographers, so I have started a group to enabled disabled photographers on facebook and hopefully over time we can help each other, share tips, knowledge etc and build a local resource to help disabled people in the area. Members are already stepping up to help determine accessible photographic places to visit and we are looking to create  information files with tips, adaptions, locations, useful websites etc. I am currently looking at transport and planing to contact a local disability group to start a conversation regarding approaching transport companies about improving access for disabled people. So this is a huge positive step and something for me to concentrate on and hopefully together we can make a difference. I have been pleasantly surprised by so many lovely warm hearted people deciding to get involved with the new group and look forward to making some new friends through it too. Anyone wanting more info do search on facebook for Enabling photographers with disabilities  UK.

So this last few weeks has brought with it new stresses - I decided to apply for PIP as I genuinely struggle with many activities of daily living. I had read that it is not an easy process ( and I have applied before )and that many people get turned down despite having genuine difficulties and illnesses preventing them from living life as an able bodied person can.  So I have done my research. At the same time, by coincidence I am having my ESA reviewed so have also had to complete a long form and gather evidence to back up this claim.  Evidence is so important to both of these claims yet it is a nightmare to obtain at times - obtaining a copy of my healthcare records did not happen in
enough time because of GP surgery protocols and the fact that I only recently joined the practice -
they did not wish to give me access to records prior to the date that I joined, despite me quoting the latest legal requirements, it took 3 members of staff to work out how to proceed. So instead I ask my GP to write a supporting letter, she refused saying that GPs have been told by the DWP NOT to write evidence letters but to complete a form that will  be forwarded to them. The DWP dont employ GPs! I know last failed attempt I made the receptionist simply sent a patient summary which did not contain the necessary details. We are told by the DWP to obtain medical evidence when they are telling medical staff not to write it. Frustrating.  I do however have a supporting letter from my physiotherapist, who kindly helped me to go through the forms.

It is a worry that my ESA claim will get turned down and I will be expected to work even though I am barely managing self care and struggle to leave home without assistance. The DWP really make ill people jump through hoops and Ive read so many accounts of peoples benefits being stopped when they are barely managing to look after themselves with M.E and similar illnesses. Ironic that this has come at a time where I am at my worst and hence applying for pip. The evidence thing is a joke, we are taught by M.E specialist teams how to self manage and once taught we are left to our own devices, often with little support. As this illness can go on for many years this means we often don’t need to see health care professionals for years unless symptoms or severity changes. This makes the task of getting evidence very difficult. So the worry and stress of all this also negatively impacts M.E and symptoms in turn making my symptoms worse. It’s a frightening prospect knowing how often the DWP and their assessors mess things up and how people get essential benefits stopped or reduced incorrectly- and end up having to go to a tribunal which can take a year or longer to get sorted out. 70% are overturned- yes the courts eventually rule the dwp have cocked up in 70 % of cases going to tribunal - how shocking is that. I certainly don’t want to claim benefits - I want to work. I did not claim benefits for the first 9 years of having M.E. and since then I tried working  from home but ended up making myself even more ill to the point that I was housebound for pretty much 28 days a month. Even now I still look for some kind of work that I can do from home so that I can feel more fulfilled, earn for myself and to feel a more valued member of society. Even though I know I can’t possibly earn enough to live on and that whatever work I do will have a detrimental effect on my health. For now I’m trying to put it out of my mind.

 Celebrating the positives- lately I manage a lot less independently, needing help to make meals and to get out, and pretty much 5/6 days a week are spent resting at home as I’ve no choice. But when it comes to getting out for the couple of hours that I can manage once or twice a week - I’m in a wheelchair or on a scooter and I do try to create opportunities to do what I love as often as possible - usually involving photography - as the rest of the time life can get pretty dull sitting at home. So for 3 years I’ve been learning and practicing gig photography - often about once a month or every other
month, but in good spells two a month. I’ve been very lucky as I’m one of a couple of photographers who gets to photograph 18 bands in our local O 2 arena over the Christmas period- spread over 3
nights - I’ve only managed all 3 nights once out of 3 Christmas’s though.

 My ultimate aim was to eventually photograph my favourite 3 bands one day. Well I cheekily wrote to Hawkwind with my request and couldn’t believe my luck that I got the gig which was amazing, so I’ve down 2 to go. The next two are more difficult as they only allow photographers who get their work published- so I applied to several media outlets and got turned down las they all have numerous photographers. So I decided to turn my hand to writing reviews and wrote a review of the last gig I photographed and submitted it - yesterday it got published which is a great feeling. I wasn’t sure the review  was good enough, it was a struggle to write as  I can’t concentrate for long and have problems forgetting words etc. I also have to limit time spent on a computer to an hour  - 2 hours maximum.  So writing a review or article needs doing over days, not  in a hour like most people would do.  The website staff are happy for me to submit more reviews, interviews and photos, so I have a gig this week with two bands where I will attend in a wheelchair with help and take a few photos plus write a review  and in December I’m interviewing and photographing the Quireboys.

The other two bands
 I want to photograph are both touring soon - Doro Pesch in 3 weeks near me , so I’ve asked if I can have a photo pass if I can get my work published- and it’s a yes if I can get the editor to confirm publication- so now I’m waiting and hoping that they want a review and photos of Doro and Saxon who they are supporting. Fingers crossed - so close to one of my dreams happening.

My 3rd band is Def Leppard and it’s the same situation - I need confirmation that I can be published- so exciting - I’m hoping the website editor wants these too.

It may sound like a lot of work photographing a gig but for most you only get to photograph the first 3 songs so it’s not too bad. I’ve been doing it from my wheelchair lately and just standing or walking for minutes at a time then sitting again. It is tiring but the adrenaline seems to help push me through those few minutes. I’m lucky that I can cope with the noise and lights. Although in days after I like a lot of quiet 🙂

I’m also working on writing articles to get published in photography magazines - as I can’t do as much photography most of the time I can still try to get my work published. It could be an option for paid work from home if I can manage it, and there aren’t exactly a lot of options for paid work when I am pretty much stuck at home forced to rest 5/6 days a week.

I wanted to share this because I feel it’s important to still have goals and dreams in your life - yes we have to change our goals because our bodies misbehave, but if we adapt and dare to dream we can still make things happen. I know I tire myself out more by doing a gig each month but to me it’s worth a bit of extra pain and symptoms when no matter what I do when I go out for two hours I end up with worse symptoms anyway.

Here is a link to my first review https://www.gigsnortheast.co.uk/latest/review-big-foot-12-10-18-the-cluny-newcastle/

Im still here. We are not our work, work is only a part of our lives.

No matter how much I try to be positive, its weeks and days like this that are my own personal hell.
Days when all I can manage is to have a bath but then cant dry myself properly, cant dry my hair and have to sit with cold wet hair because there is nothing I can do about it. I was so grateful that my daughter arrived home and very kindly dried my hair so I didnt need to be cold. Unfortunately I look like the yeti after 5 years of not brushing or grooming my hair - dont get me wrong, Im so grateful to have dry hair, but I could not step out my home like this, even if I could walk that far today.

I think I had about 3 spoons today( look up spoon theory if you havent heard of it) and used them all trying to make myself some food, and thats it, no more energy, complete exhaustion. Ive managed nothing else all day.  This is one of my bad days

Ironic isnt it that I applied for disability allowance this year, and was told in the letter that I CAN cook for myself, I CAN bath myself and manage all my hygiene requirements, I CAN/manage to get out and socialise, I CAN manage to walk to public transport and get out to socialise effectively.  Today I cant do those things, how can they say I can when I cant? Some days I can, but most days I struggle to do one or two of those things, never mind all the stuff I should be able to do each day.
I can count on one hand how many times Ive made it out to socialise this year and I rarely see friends or family because I struggle getting ready most days never mind going out as well.  If I want to go out I have to have a bath, wash and dry my hair the day before most of the time, as I usually cant manage all that and getting out ( even on the rare occassion I can afford a taxi). A couple of hours out can exhaust me for days on end.

This week I had to attend an appointment with my daughter, I prepared the day before, so I could make it. I caught a taxi there and the bus immediately outside the building into town. Its been so long since I took my daughter shopping, I wanted to treat her to a mum/daughter shopping trip, but even half an hour on my feet with her, walking minimal distance, left me worn out. I sat down numerous times for rest breaks but it didnt help.  But we made it out for a meal which was nice to do and I made it to the cinema with my boyfriend. Now this was not a great distance to walk, I did struggle, but I did manage it, only just. However, I have suffered the whole week. Today and yesterday is the result from trying to get out for a short time, Exhaustion, mentally and physically. Severe pain in my whole body yesterday, but  not so bad today. I cannot get out, I cannot manage  to cook a meal or do housework, I cant groom myself to a reasonable standard. I cant even walk down the stairs and back to put my rubbish out. Yet I am not entitled to any help.

I am an ex nurse. I was always determined to remain independant with this illness and have managed to for 8 years, but I am not this year, through no fault of my own. My M.E specialist knows how hard I have worked to keep some level of fitness and activity. But I simply cant do that very often at present/ If Im lucky I get one or two days a month where I can actually get out, but I really suffer in the days afterwards. I am furious that in my time of need, I finally give in and apply for help and am basically told that everything I have said is a lie. How dare they. I have numerous Dr and M.E specialist appointments which prove them wrong, but because I rarely visit my GP, because I know there is nothing they can do to help me, I am seen as not needing help. On appealing, and being told a 2nd time I actually had zero points I completely broke down, I did not have the physical or mental strength to fight another appeal. I am, sure many others feel this way and this is how they get away with it. But now I am about to apply again and will be writing a formal letter of complaint re their dispicable treatment of vulnerable, ill people in need of help. Thy do not allow an appeal after x amount of days, but this is wrong, I am going to challenge all that has happenned and I am going to enlist help to do so, as I cant always think straight, due to malaise, fatigue etc. UPDATE I have since read my medical notes and no wonder I didnt get awarded because my Drs neglected to even document how it affects me, my symptoms etc, I have since discussed this with them!

So, I am sorry this is a rather negative blog today, but life is not always a bed of roses. I hate posting something so negative, especially considering how well I have managed for so many years. But, if people like me are not completely open and honest then the general public will never understand what it is like to live with M.E, year in and year out. I have always thought I would be one of the people that would recover from it, and go on to climb mountains again and cycle every day like I used to, not get worse. In 2014 I actually thought I was starting to recover and did really well for a few months.

My experience this year makes me feel like one of the forgotten people, people slowly fall away and stop bothering because I become unreliable due to illness, until in the end nobody at all bothers. I know its not just me this happens to. I truthfully tell family how I REALLY feel, and they too fall away, fed up of the hearing the crap I suppose, and before you know it there is nobody in my life other than my daughter and boyfriend. I see other friends via social networking online that have nobody at home, nobody to help them. The system is so wrong and society has changed, leaving more and more people isolated, to fend for themselves inside their concrete buildings. If you cant mobilise to get out then your pretty stuffed. Its like nobody cares anymore, people are too busy with their own lives, until it happens to them. Such as a lovely friend down south, living on his own, fighting cancer, even he gets very little help, stuck inside, unable to afford simple things like internet or phone, This makes me sad to realise how our society has turned out.

 PLEASE NOTE THIS WAS ACTUALLY WRITTEN OVER A FEW WEEKS AS I COULD NOT CONCENTRATE ENOUGH TO WRITE IT ALL AT ONCE.+

Another couple of weeks further on

Life is strange.
From an early age we are taught to constantly strive to better ourselves, with goals of learning, socialising, then concentrating on a career, finding a partner and for some having a family, and a life where you can fullfill your dreams. Until the age of about 30 I followed this path pretty much, I had a career which wasnt exactly easy, but I enjoyed the challenges it threw at me daily, although I wasnt really equipped for the extreme stresses that accompanied the responsbilities of being deputy matron of a nursing home aged 28, especially as I was coming to terms with losing several members of my family and a close friend over a relatively short period, ( Exit nursing - a 2 month stint working in a chip shop actually enabled me to recharge my batteries then I went back into full steam ahead. I got married, bought a house and along came my daughter. I moved into a senior nursing position and adored both learning and teaching others, loved every moment of being a mum and had a good relationship with my husband - we both pursued our hobbies of cycling, camping, climbing mountains. keeping reptiles, landscaping our garden etc. To some Im sure I had the perfect life, even if I was stressed trying to balance everything.

Well guess what, life doesnt amble along perfectly for everyone. My husband decided he loved someone else, we split, I lost my job as a result, because I would not leave my daughter crying at night with a stranger, then we lost our home as I could no longer pay the mortgage. I was devastated, but such is life, I eventually moved on, tried to start afresh down south, but this did not work out either,  Then along came the bombshell of M.E which took almost 2 years to diagnose properly. At first I was so bad I crawled from room to room, but over the years I had good periods and bad. In 2014 I tried so hard, with sheer determination I went out walking, increasing distances each day, no matter how hard it was or how ill I felt, I tried to walk slowly as far as my body would allow. Within 6 months I managed to walk 7 and 8 miles. Now over the years of having M.E ( from around 2006/7) I had taught myself photography, from home initially, then getting together with a local group on the street where I lived.. I started doing fashion/editorial type images and submitting them to magazines, during 2014 I managed a few of these along with ongoing achievements in both competitions and photographing my reptiles. I wasnt well enough to work reliably for anyone else, so I decided to start my own business in photography - at first running short workshops, doing magazine editorials unpaid to get my work noticed and selling my images to newspapers, books, zoos etc. I only managed to do this with massive help from new friends I made in the area with similar goals and by working from home. I found that if I set up everything for the workshop one day, I managed to run a 4 hour photo session the next day and leave putting everything away until the following day - pacing myself as much as possible. The problem being that this made me ill for 2-5 days after the workshop, still it gave me a sense of pride and made me feel more worthwhile.

So you can see, my goals always remained - I want to work, I love to work, BUT it makes me ill, VERY ill. This in itself does not stop me, I would rather work, 4 hours a week despite it making me ill for days afterwards. It gives me great satisfaction helping others to learn and achieving my goals, However, in 2015 I started struggling more and more and by the end of the autumn I simply could not manage my workshops, I adapted and tried 2 hour workshops instead, but it really wasnt worth putting myself through it. I held my last workshop and last photoshoot that autumn. Come January this year I was worse, so much pain every day, and I have slowly declined health wise since then.

I did not give up. I turned to healthy eating and trying to get out when I could. I had the healthiest diet I could ever even imagine - raw vegetarian food 75% of my diet, whilst trying to persevere doing household tasks and short walks to keep my body moving. I tried taking so many supplements, following advice from  specialists etc and yet despite trying every technique / method I could to try to raise my stamina again, nothing has worked, not even a little bit. Ive no idea why. Ive tried everything and more, than I did in 2014 and yet here I am, mostly housebound and in pain, getting washed or making a meal leaves me exhausted, my sleeping pattern is the wierdest Ive ever known, I have constant sore throats, cannot concentrate most of the time and have become incredibly forgetful. Ive also become very low due to not getting out, not seeing family and not seeing friends ( after moving across the country I had barely started making good friends before my health declined) Now, I am a fairly determined person, I HAVE NOT GIVEN UP and I DO use positive thinking. I looked for a new hobby I could enjoy at home and started learning how to make jewellery - I love making jewellery out of copper, copper wire and clay whenever I have enough energy. So whilst Im not managing to work, Im  learning new creative skills that will be useful when I am well enough to do editorial shoots again, and I can even run a new business selling my jewellery as my health allows.

Do you see what is happenning here?  Im still centered around working as one of my main life goals, even though my health is saying otherwise. Why is this? Why are some of us so focused on working as a main part of life, despite having an illness where your body is screaming STOP? Well, if I work I can pay all my bills, and enjoy life more, go on holidays, treat those I love etc.  As it is, I am forced into the horrible position of claiming benefits for the first time in my life and being made to feel worthless for doing so - yes people really do judge you!!! As I need help at home, at present, my boyfriend has moved in with me - and for this wonderful priviledge of having him helping me to actually live they have cut my benefits by £50 a week, meaning I can barely afford to live, despite having worked hard most of my life, even whilst ill for years. They expect 2 of us to live on a total of £25 more than what I get living on my own!!!! How the hell does that work? It doesnt! And yet, they have deemed me unfit for work but declined my application for disability - even though I am so exhausted following a bath that I usually cannot dry myself all in one go - I need to rest. On explaining drying/styling my hair or making a meal requires me doing it in small steps over an hour or more - one health professional actually said " why is that a problem"!!!!!! Bloody idiot. Its a problem because I am so exhausted from getting ready that I cant go out - his response - well leave your hair and dont put make up on - yeah right, Im going to sit in colder months with a cold head waiting for my hair to dry and go out looking like death dragged through a hedge backwards, thats going to make me feel GREAT. Thanks a lot. Yep, thats about as much help as I get from the local health team. They drum into you, pacing and repeating plus increasing exercise, I already know all that, its what Ive done for years, only its not working now, its making VERY ill! Im an ex nurse, Im not an idiot. Ive done everything they suggest, Ive stuck at it and done my own research and tried endless suggestions and right now Im so tired, Im too tired to think, Im too tired to even switch my computer on most days - its drains me rapidly, I literally cannot stand bright lights or a tv on whilst someone is talking - I actually cant separate the two and only listen to one. If you are lucky, I might even remember your name! Everyday I forget everyday stuff, but Ive learned to hide this. Ive taken medications and supplements until I forget the difference between those and food! The side effects of many medications have been pure hell on earth, my body does not like medications.

So here I am, stuck at home, where the government thinks I should not be, and thinks I will feel better about myself if I work - yes I will IF I actually can work! pretty much forgotten about by my most friends and family because I "look well". I see nobody generally, not even family. Last time I went out I walked around 800ft, sitting resting 3 times pacing myself, I was so ill for days and in constant pain. It was not worth going out for that. If I do go out I need to catch a taxi pretty much to the door and back now and yet I cannot really afford this, so Im pretty much stuffed.  If I sound  frustrated thats because I am, because I have tried so hard, where others dont try even a 1/4 as much in their normal day to day lives and yet they judge! Despite all this I still have my dreams and goals, and I do find enjoyment in life.  My goals are different for now, my main goal is to help my daughter be happy in her life and that alone gives me more happiness than anything.  Ive got a cat now who has become a wonderful companion to everyone at home, he makes me smile every day.

I still dream of simple things like a few days away in the Lake district, which would be heaven, and being able to do very creative editorial photoshoots for magazines ( I have some amazing plans for when I feel well enough again), running workshops again and running both a photography business and a jewellery business. I will do these things. But for now my body and mind simply will not let me, and thats ok. I can regroup, read about history and self development, make plans for the future, watch inspirational videos and enjoy the world from afar. I can enjoy sunrises and lightning from my window and the beautiful photographs taken by all the lovely photographer friends Ive made. Just because I do not live the dream life doesnt mean my life does not go on, it simply means that my body needs rest at present and hopefully I can entice it to climb mountains and cycle in the countryside again given time :) Work is not who we are, only a part of life, as is our health. We are resourceful creatures and we can find new ways to enjoy life. I will climb my mountains again one day and I will do  things I love, whether my body says no or not..

WEEKS ON AGAIN


So yesterday I managed to walk further than I have in months, I was initially quite excited I had walked further, it was not easy but I did it, my destination - a specialist vegetarian restaurant, my first night out in town in over 6 months. I planned going out directly following a Drs appointments - which went appallingly as it was a Dr that simply does not hear what you say. I figured it was worth pushing my limits to have a nice treat, and would be worth the days of pain and exhaustion that would result. So I reached said eatery, totally wrecked, desperate to sit down, but excited to finally be out again and have a nice veggie meal. 
Well plan foiled, on asking for a table for two, in the near empty venue I was told I would have to wait for food as they had a large order in. I said I didnt mind waiting a bit. Then I was told I would have to wait 2 hours!!!!! for food!!!! there were two tables occupied, I was puzzled so asked why. Apparently the table of 13 had just ordered and they cook each meal individually from scratch. I looked around at all the empty tables, on a Friday night in the city centre and was completely astounded at the total stupidity of the way of running a business. By all means make fresh food each day, but this is ridiculous. So, already pushed to my limits physically I walked to a second restaurant, where there 8 choices were so dire that my partner refused to eat there and quite honestly there was only one thing I found appealing as they repeated the ingredients in all the dishes giving little choice. At the this point I could hardly stand and was pretty peed off. Our special meal in town, my first proper night out in town in over 6 months resulted in cheesy chips say outside with the wonderful live entertainment of Newcastles finest drunks. Followed by the bus home, only to be told to get off the bus two stops away from home as there were roadworks, and the bus driver informed us we should know about it as there are notices in all bus stops - well not at the stop we got on. So despite already struggling to hobble along I had no choice but to slowly walk a mile home and virtually crawl up the stairs home. All this with a freshly trapped nerve( for which I bought deep heat patches and applied one whilst out only to discover it didnt work at all) and dizzy as hell as it seems I have labyrinthitis, which my inept Dr did nothing about either problem. Followed by no sleep, pain all night and total exhaustion. Just a regular day in my life then! It has not been a good day. For those that dont know, when you have M.E you need to carefully plan your activity levels and not push yourself too far and it comes back and bites you on the backside for several days afterwards, I can liken the following days to having climbed Ben Nevis and having flu at the same time. 
My other inept medical specialist recently said that if I pace myself and plan things then its no problem - I think I will show him this blog.
Well today is a new day, and Im lucky to be alive and have a home, Im lucky I dont live in Haiti (STORMS IN HAITI). Although no so lucky to have inept Drs, idiots running the main local veggie restaurants, a transport system that cant manage to communicate with their passengers leaving them in difficult situations with no warning. At least the street entertainment in Newcastle made me chuckle. Thats todays rant over, for now...