A Sort Of Edinburgh Adventure

At the moment we have family staying with us from away & when planning their trip a few months ago, we decided it would be nice to get away for a few days to a different part of the U.K. Our chosen place was Edinburgh & after scrolling through Airbnb for quite a while, I came across a lovely apartment for us to stay in. This was planned before all the Herxes happened & so as the going away date drew closer, my anxiety about actually surviving the trip heightened.

Now I've crossed numerous County borders & the Welsh border a couple times but in all the years I've been alive living in the U.K, I've never crossed the border into Scotland. So I was determined to get there & kept telling myself that I'd be okay if all I could do was get there & stay in the apartment.  It looked like a nice place to have M.E & deal with the Post Excursion Malaise that I would undoubtedly have from the 3 hours plus journey.

The week before we went, I pretty much did nothing but rest as much as I could as I needed all the energy & strength I could get. I made a packing list {yet somehow I still managed to forget my ever faithful long boots, which I really could have done with!} & began slowly packing a good few days earlier than anyone else that was coming so I could at least have the day before we went to rest properly.

The journey there was pretty straight forward & heading north on the M6 {my favourite stretch of that motorway} the scenery was gorgeous through Cumbria & then we crossed into Scotland & it became even more stunning & then just when I thought Scotland couldn't look any more beautiful, we came off the motorway & onto the A road leading to Edinburgh & it was breathtaking! I kinda lost count of how many times I said the word wow! From the few places I've travelled to, I've never been anywhere that I would happily move to, {I love where I live} until I got to Scotland. Even though I only saw a little bit, I fell in love!

Scotland you are Stunning!

I was so happy when we arrived at our home for the week {well 5 days} There were a number of stairs to slowly navigate going up to the apartment, which was on the first floor. However, once in, it was just as lovely in person as the pictures & was definitely as nice place to have M.E & killer PEM. I had already planned to do nothing on the Tuesday {we arrived on the Monday. afternoon} So with help, I got in my pyjamas & while the family all went out for dinner, I rested on the sofa. Once they came back, my mum helped me into bed. I was so exhausted & sore from being the car for so long.

Chester Street Apartment

Although I knew before going, I wouldn't be able to do everything I wanted, it was still hard being left on the sofa while the family went off exploring the Castle for the day on Tuesday. As much as I love history, I knew it would be a no no for me as I simply couldn't have walked all the way around it {I also stupidly left my crutches at home} So I just vegged out on the sofa trying to help my poor exhausted Mitochondria gain as much energy as possible so I could try & go somewhere on Wednesday. My amazing mum did bring me back the Castle Tour guide book, so that evening, I got to go round the castle too!

Now if you know me well or follow my personal Instagram, you'll know I love all things tartan! So my goal was to try & buy something tartan to come home with but I was a bit worried as I knew I didn't really have the energy to be in & out of shops all day looking for something. Thankfully, one of my friends came to the rescue & told me about the Tartan Weaving Mill, right next the Castle entrance. This was an absolute life saver & I messaged my mum to scout it out for me while she was out on Tuesday. Planning ahead is always a must when your chronically ill, it helps to save energy & helps the anxiety to know what a place is like before going. I also found the shops website, so I could get an idea of the things they sold & the prices.

Edinburgh Castle, taken on Friday morning before leaving.

Wednesday I had a restful morning, got ready slowly & after lunch we all headed out to the Weaving Mill. There's no way to drive right to the door, so I had to be dropped at the bottom of the hill {the start of the Royal Mile} & slowly hobble my way up with my mum's help. Once inside you are greeted with the magical {well magical for me} sight of all things tartan! From clothing, to teddies to mugs to keyrings. As we slowly wandered around I soon began to realise that having an allergy to Lambs wool & cashmere completely, in want of a better word, sucked! All the wearable items I came across were either lambs wool or cashmere & I can't wear them {the irony of this allergy is that my surname is Shepherd!}

So I'm looking around at the things that I would love to wear & we come across a sign with a list of surnames next to a table with a pile of books on it. my surname isn't on there but as I read out that "If you can't find your name here, just ask" a man appears & said "that's me" & then asked my surname. I then found out that I have one of the rarest & oldest types of Tartan associated with my Surname. {Info about it here, if you're interested: Tartan Register } So rare that you can't find it in the Tartan Weaving Mill! It's a black & white check type tartan, but he said that I could wear any type of black & white tartan because that's what my name is connected to. So I decided, that even though I wouldn't be able to wear it, I wanted a black & white tartan scarf to bring home. My mum found a lovely one & I'm going to hang it from my bookcase. {Also I already have black & white check pj bottoms, I've been wearing a version of my tartan all this time & never knew!}  I also got a gorgeous tradition teddy bear wearing Harris Tweed which was handmade in the Outer Hebrides, I've named him Wallace. After an hour or so being surrounded by all the tartan, I was taken back to the apartment to rest while the family went off our for dinner.

Sir Walter Scott's Monument.

I really wanted to get out on Thursday but decided against it, I was too exhausted & in too much pain. I also knew I had the journey home to get through on Friday, so I stayed in while the family again went off to explore. It's funny, when I'm home & it's just me & my parents, or even when I go away with my mum, I never really think about what I can't do or have that "missing out" feeling too often. But having others with us & they're going off places, it's kinda hitting me now & then how little I can do compared to the healthy people around me. You don't get a holiday from your chronic illness. But anyways, from their adventure to spy out HolyroodHouse & Arthur's Seat, I was brought back the guide book for the Palace {which I still need to read}

Part of Thursday was spent directing my mum while she packed my case & then getting a shower so I was clean & kinda shiny for the journey home. Friday morning I got ready & then my mum & my brother gave me a tour of Edinburgh so I could at see some of the old town properly & take some photographs. Seeing the Scott Monument in person was a highlight, along with stopping at a set of traffic lights right next the The Conan Doyle Pub! Then we picked up my sister in law & our cases & headed 3 hours back south down the M6, the scenery was just as stunning seeing it for a second time.

The game's afoot!

The journey home wasn't so great, pain & anxiety wise. I don't like motorway travelling at the best of times & there was a lot more traffic & trucks & stupid drivers on the way back, which didn't help & this all kicked off the adrenaline so I spent most of the 3 hours feeling pretty rough & was very glad to see home, my bed & especially my cats!

Even though I couldn't explore Edinburgh the way a healthy person can, I really did enjoy time away. Although I only managed to do something for a couple of hours on 1 day out of the 3 full days we had in Edinburgh, the change of scenery was just what I needed after the horrendous few months I've had. Yes I've had PEM {that was to be expected} from it to deal with & today is the first day I've managed the stairs & felt okay enough to sit in the living room, it was worth it.

I hope you're all as well as can be & are taking care. If you want to see some of the photographs I managed to take, please feel free to have a nosey & follow my Photography Instagram: @loelizabethphotography

L x

Let's Talk Bioresonance: Part 6 - 3 Years & Time to Stop

{Disclaimer: This is my own experience with this treatment, other people's experience may be different. I am in no way promoting this treatment & telling you to have it as it's a miracle cure. I am simply giving information & sharing my experience. Medical care & treatment is a personal matter & what works for one person, may not work for all. Also the fact that someone chooses a treatment that you may not agree with, does not make that treatment wrong.}

I wasn't going to write about this, as I didn't want people to get the wrong idea, but since I've been documenting my experience of Bioresonance from the beginning & so many people have contacted me regarding it, I thought you deserved to know...

18th of June marked my third year of Bioresonance Treatment & today {20th July} after much thought, I'm calling time. I'm done.

My last treatment was actually in May, if you've read my last few posts, you'll know why. My original plan was to have a break until September, but I have now decided to cancel the rest of my appointments for the year. I've reached a point where I feel there's not much more it can do for me & my body has definitely had enough & needs a break from everything as it's been through the ringer these past number of months! I never expected it to cure me & even my M.E Specialist at the clinic I attended a couple years ago said I would never fully recover, at best I could expect maybe 80% recovery with careful management but nothing more, probably less.

Copyright Louise Elizabeth Shepherd

This doesn't mean that it hasn't worked for me. When I first started, I was on the verge of my organs failing, that's how much damage the M.E had done. I was bed bound & my future was bleak. The treatment has helped give my body the support it needed to begin functioning better again & has repaired a lot of the damage. Every few months I would begin to see small improvements & a slight lessening of certain symptoms, mainly the more acute ones.

In the first two years, I would have periods where my health would plateau, but it wouldn't be for too long & then I would have another gradual step up in improvements again. I was managing more activity & generally doing better, in-between the down times that come with having M.E. However, for the past year, the improvements have been few & far between. It's been a very up & down year & it's really taken it's toil. This, plus what I've dealt with these past few months in particular, have lead me to the decision that it's time to stop.

What's interesting is when it comes to all the medication & supplements I take, I monitor them closely & make sure I have breaks from them so I don't overload my body or cause my body to become so use to them that they are no longer affective. However, I've never done this with the Bioresonance & to be completely honest, this past year has been a year too much & I think it's completely exhausted my body. So no more.

Copyright Louise Elizabeth Shepherd

I need my body to rest & figure out having M.E on it's own, something it's not done for 3 long years. I need to figure out what my body can actually cope with on its own instead of relying on the Bioresonance to sort it out. On a mental level, this has been a huge benefit; I am no longer tied to a machine 3 days a week & recovering from treatment the other 4!

Don't get me wrong, I'm not saying these past 3 years were wasted or that it hasn't worked, it has. This has helped me & got me to the point I'm at now & I'll always be grateful for that, but I personally feel there's no point carrying on with something when the benefits of it have now reached their limit.

I'm not giving up, I've accepted I won't ever be 100% recovered. I have however, done everything I can to give my body a decent shot to recover as much as it has & this is just another step on the road. The Bioresonance has served it's purpose, it's done what it can & now it's up to me & body to do the rest.

Here's to a new chapter, if you will.

I hope you're all as well as possible & taking care,

L x

Time for an Update - Herx & EBV

I'm sat here watching The Great British Bake Off, my ultimate comfort TV programme, & I'm trying to think of something to write about. Then I remembered that my last couple of posts on here all the way back in May & were updating you on all the Herxes I was experiencing thanks to being overloaded with an Homoeopathic medication used to kill off the Epstein Barr Virus.

This made me think that maybe instead of trying to write some random post, I'd let you all know {if you're interested} how the past couple of months of recovery have been going. If you need a reminder of my previous posts, you can read them here: What The Herx 13th April -17th May & Fight Until You Can't - Herx/EBV Update

The Monday after I wrote my last update, I had to Doctor called out to me. This was mainly to put my mind & my mum's mind at ease that the EBV hadn't caused a stroke, since I was struggling to speak so much. After being checked, to my utter relief, he cleared me for Stroke but being the thorough Doctor he is, he wanted me to has a load of blood tests done to make sure the EBV hadn't caused any damage to my organs.

A nurse came a couple of days later to do the blood draw, she was absolutely lovely & when she liked my Cookie Monster pyjama bottoms & that she didn't like having her bloods done either, I knew she was going to be great at it. It's always been my experience that the Nurses that don't like having it done, will always take extra care when taking someone elses. I had the results back by the end of the week & everything was clear - another massive relief!

It took the rest of that week for my handwriting to be just about back to normal, though I still found I really had to concentrate when writing each letter, this improved after another week of perseverance. As I mentioned {I think} in my last posts, my energy levels were rock bottom & showed no improvement for a good month. I was back to being fully bed bound again after about a year & to help preserve energy when I needed to move, I was using my crutches. It took a little while but as I began to feel less shaky on my legs, the less I used them, as I knew I needed to begin to build up my strength again before even attempting to get down the stairs.

Photo Found via Instagram

Once I began to feel a bit more myself, the first activity I attempted was a shower. It left me utterly wiped out but was proud of surviving it. As the weeks on, I was able to add an extra shower in every few days, while each one was exhausting, I knew I needed to keep going with them as these small steps to help me recover & at least get me back to my previous baseline.

Little by little I'm coping with more activity, going from one shower wiping me out a couple months ago, to 15 minutes in the garden causing a weeks worth of PEM a month ago, to a couple of weeks ago managing an outing in the car & a tiny wander round a shop, which of cause wiped me out for a good number of days, but I am so very proud of the progress I'm making & so incredibly proud of my body. It just keeps on fighting with me & copes overall really well with all I'm asking of it.

Okay, after that positive stuff, time for some not so positive; My speech is still pretty messed up! Although the stuttering I'm doing is lessening, I've not had a day yet when I haven't stuttered. I've also noticed that when my exhaustion is at higher levels than my normal, the stuttering worsens. In the past, at that point I would slur, but never stutter. I know these things can take time & I'm going to give it another couple of months to see if there's anymore improvement. If not I think I'll be heading to the Doctors to see what can be done, as for all I know, the EBV could have caused damage to my brain, which wouldn't show in any blood test. I know people live with stutters everyday & I could have speech therapy, but I can't help but be frustrated by it, by the fact that the medication I was told would help me has caused this. To be honest completely frustrated by the entire situation & I'm mad at myself for even trying it; but when you've got an incurable illness, you'll try anything to feel even just a little bit better!

I'm still not having any Bioresonance or supplements, other than B12 which I started back on Monday, which after my mum again spoke to the person who deals with the EBV, is a good thing. After finally getting a proper explanation on how the EBV works, she said to basically leave it for as long as possible {she also said I was put back on the EBV too early after the first major Herxes I had!} With this information, I'm seriously considering cancelling the rest of the Bioresonance appointments I have booked for the rest of the year, I was going back in September but I feel like I need a longer break. We'll see, I have another month before I need to make a final decision.

For now I'm just carrying on as I am, being as sensible as possible & pacing out everything I need & want to do. One thing I have found, once I was able to manage the stairs again, is that I really don't want to be in bed or in my room, which really on some days is the best place for me, I'm putting this down the fact that my mental health is on the up after taking a massive hit. But as my fellow M.E Warriors know, bed is often the best place to be so I'm having to make myself stay there on my worse days to ensure I get the best possible rest.

Copyright Jane (Drozd) Levi

I'm doing this today & so very thankful to past me for recording lots of Bake Off's to watch. It's also helping me to deal with the massive amount of anxiety I'm currently experiencing thanks to the Thunder Storm that's going on while I write this.

So I'm just "looking for Stars" & getting on with it & trying to get back to my normal as best I can. I think that's pretty much it, I don't think there's anything else to say on this matter now & as this storm is getting worse I can't concentrate I need to stop writing & deal with the anxiety.

Take care everyone,

L xxx

"Fight Until You Can't..." Herx & EBV Update

This won't make much sense if you haven't read my previous post on what I've been dealing with this past month, so I'll wait while you go read that first... What the Herx! {13th April - 17th May}
Okay so now you're back & caught up, I'll fill you in on the past couple of days;
Thursday, I took my required drop of EBV in the morning & within an hour the now familiar aching in my lower back arrived with its new best friend tingling & throughout the day they came & went. My pain was increased, as was my exhaustion & nausea, along with every other M.E symptom you can think of.  I was also getting a sharp pain in the side of my head, it would only last about 10 minutes each time but it kept coming throughout the day & would switch sides just to throw me off. Small Herxes are still Herxes.
There were also a lot of tears this day, something I rarely do or admit to. I'm usually pretty good at keeping it all together & happy despite what I have to deal with daily. But this past month has broken me & I can feel my body giving up, it's exhausted, I'm exhausted & I felt like with each drop of the EBV I was continuing to overdose myself. 

Image Source: Instagram
By 8:30pm I was very done with the day & my mum helped me to bed. As I tried to discuss what I should do & how this treatment was affecting me, physically & mentally, I began to struggle to talk. One of my "over done it" signs is slurred speech, stammering & stuttering but this was something else! This was worse! The only thing I could get out of my mouth at one point was "I can't speak." I had words in my head but my brain just couldn't make the necessary connections to my vocal cords & mouth to enable me to speak them.
Eventually I managed to get out what I wanted to say but incredibly slowly, each sentence full of stutters, repeats of words & pauses to give my brain a chance to do its thing. It was so frustrating & thank goodness my mum knows me so well that she can finish my sentences!
If I wasn't on the EBV, then I would think I was at the start of a big M.E flare or even a relapse. I'm getting the smaller less common symptoms I haven't had in a while, along with a worsening of my usual daily ones. I decided I needed to stop the EBV. I don't think I gave my body enough time to recover from the severe Herx I had & I think there's a lot of it still in my system, along with the toxins released from the dying virus, & staying on it, even one drop a day, is just adding to the problem & making me worse. Damn Hyper Sensitivity!
It's a horrible feeling to feel like you're giving up & failed, especially when giving up isn't something you normally do. I've been someone who has kept going, coped & dealt with whatever this illness & the treatments I'm having have thrown at me. I've learnt to live with the pain, exhaustion & all the other symptoms of M.E. So this feeling of defeat is horrible but I just can't fight anymore, my body needs a break. So even though I feel like I'm giving up, I know deep down this is the right decision.
I explained all this to my Specialist in a message Thursday night & Friday was my first day off the EBV. All my M.E symptoms are still here in an increased state, I'm waking up in more pain than my normal & my nervous system is still tingling away more than it usually does. I'm utterly exhaustified {exhaustion personified!} & although I usually pull all dayers, I'm allowing myself to sleep if I need to. I don't wake up feeling any better, I usually wake trembling & feeling worse. But sleep can allow your body to use energy to help heal itself, which it can't do while you're awake. I'm still getting a sharp pain in my head throughout the day & I'm also getting a bit of pain in the same side as my liver. Breathing feels like an effort at some point & I keep getting a slightly heavy feeling on my chest. Basically I'm a wreck! The only thing that has decreased slightly is the nausea.
My speech is still frustratingly bad & the phone call with my specialist on Friday was hard to get through, for us both I imagine. My reaction is still baffling the people that make EBV & my Specialist said "You're one in a million, which can be good but not in is case." He also gave me a little pep talk, as did my mum, which I needed. I just hope in the coming days, with plenty of rest my speech becomes more normal again. I mean I'm not the most talkative person, I am better in print, but I'd still like it if I didn't have to take a good few minutes to ask for a cup of tea!
I've spoken with my Specialist again today & since my body was so overloaded with EBV, which has then caused the virus to flood my body with toxins, the plan of action now is to detox my body as quickly & as effectively as we can. This is why I can not speak properly, the toxins are effecting my brain & seem to have caused the disconnect. This whole experience has scared me & now not being able to speak properly is scaring me even more.  I just hope in time & with the detox treatment plan I'm going on, my speech will return to normal.

Image source: Pintrest
Regarding the EBV, at this moment I'm not sure I will try it again, even once it's all completely out of my system & the toxins are gone. The response my immune system has had is very similar to that of someone with an Autoimmune Disease & it's not something I want to go through again. I know the next time might be different but it might not & I'm not sure I want to put myself through this again.
So right now, I'm just willingly myself to keep going, keep fighting & reminding myself that stopping this medication is the right thing to do for me & I haven't let myself down or disappointed anyone else. The response my body has is completely out of my control. But at least I've tried it, it hasn't worked out & that's okay. My priority is to rest & take care of myself & do whatever is necessary to help my body heal after the ordeal it's been through. This means I may not be about on social media as much, just until I begin to feel better.
I hope you're all as well as possible & taking care.
L x

What the Herx! {13th April - 17th May}

{Firstly, I'm not recommending any homeopathic medication or any treatments in this post, I'm simply sharing what has happened to me. If you do want to know more about this medication, then please feel free to email me & I'll tell you more. Secondly, this is a pre-warning that this is a long post as this documents what I've been dealing with over the past month. It took me a while to write & the brain fog didn't help, thank goodness for autocorrect!}

During my April Bioresonance Appointment, my Specialist told me about a homeopathic medicine that he had been trailing for the past 9 months with a few of his other patients that also have M.E & he'd seen some good results with it. He didn't use me as part of his trial was because I was simply too sick & weak to handle anything new. However, he thought I might be okay with it now as I'd been doing better He gave me the details of the company & the person selling it & the next day my mum very kindly ordered it for me. While I waited for them to arrive, we had an email detailing down the medication, {Lymphatic System Liquescence, Adrenal Liquescence & EBV, which targets Epstein Barr Virus} & the dosage of each of them.

Here's how the next few weeks or so went while trying these medications:

Thursday 13th April - Thursday 20th April
Following the dosage given in the email, I began taking the medications. Because the EBV targets & kills Epstein Barr Virus, it was recommended to take the lower dose of 5 drops for a few days, then 5 drops twice a day & then after a few days, up it to 7 drops twice a day. I aired on the side of caution because my body is so sensitive to basically everything {well it feels that way!} So I decided to take the 5 drops once a day but up the dosage a lot slower, so I did a week at this dose.

Besides the nausea that came from initially taking them, everything seemed fine, I seemed okay on them. Looking back now, I should have paid much more attention & realised the increase in pain & tingling I was experiencing wasn't just simply a few bad M.E days.
One of the few Sunsets I saw during my Herx week.
Friday 21st April - Saturday 22nd April

After a busy Thursday, I was dealing with Post Excursion Malaise {PEM}, so my pain & exhaustion levels were quite high. However, I carried on with the medication & had now decided {thinking all was okay} to up the dose of the EBV to 5 drops twice a day.

My pain & tingling was still bad but Saturday I wasn't feeling as bad & felt the PEM was easing a bit. I even managed to potter around my room, tidying it up & sorting out a few little jobs that I'd put off or wasn't well enough to do the previous week. Again I took the EBV 5 drops, twice & put the pain & tingling I was feeling down the PEM & M.E.

Sunday 24th April

I woke up Sunday feeling pretty rough; I had a really sore throat & one of my glands was up. I had that feeling of dread that only someone with a chronic illness knows when they think they're coming down with a "normal person" illness. As the day went on, I felt worse, but I took my required doses of EBV & at 9pm onwards things got extremely bad...

I began feeling incredibly ill & my pain level throughout the night was getting worse, by 11pm it was reaching a 9 on the pain scale! The worse pain was in my lower back & my head. The pain, especially in my back felt like someone was constantly drilling into me, I had a hot water bottle on my back to try to help ease the pain & had my room pitch black as I couldn't stand the light. I felt like my entire body was swollen but on the inside with no visible signs of what was going on on the outside. I was also getting rushes of tingling throughout my body, almost like I had pins & needles everywhere.

I could feel my heart beating so fast & every breath was taking so much energy that I had to keep reminding myself to simply breathe. I'm very use to getting on with whatever my health & body throw at me, I've thankfully not had too many scary moments health wise. But that night, I was incredibly scared. In between telling myself to breathe, I was frantically trying to figure out what was going on & what could be causing this; the PEM from my busy Thursday had eased so I didn't think it was that. Then my mum simply said "Could it be the EBV or one of the other Liquescence? They're the only thing new."

I suddenly remembered while watching one of Sophia Galpin's vlogs about her antibiotic treatment for Lyme Disease. She spoke about something called a Herx & how she was experiencing them with the treatment she was having because it was killing off the viruses & bacteria that cause Lyme. I somehow managed to look Herxing on my phone & realised that that's what I was now experiencing.

For those that don't know, a Herx or Herxing is the informal name for the Jarisch-Herxheimer Reaction. It is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a sudden and exaggerated inflammatory response. This response sets your body's system off, especially your liver & kidneys, to deal with the toxins & to flush them out of your body as quickly as it can. It's almost like a final revenge as the virus or bacteria dies.

Although it's horrible to experience, Herxing is actually a good thing, it means the medication is working but sometimes at a rate that the body struggles to handle. Looking back now, I realise I had been having smaller Herx reactions from day one of starting the EBV {the other two medications are more like supplements} but I'd simply thought it was just my M.E having little flares.
My Boys Rarely Left Me While I was So Ill.
Monday 25th April - Tuesday 2nd May

After figuring out what may be happening to me, in the early hours of Monday, I messaged my specialist to ask him if this medication could cause a Herx. I don't remember much after that, just feeling like my body was shutting down in a way & I could barely keep my eyes open. In fact all of Monday was spent mostly sleeping or trying to hold a conversation on the phone to my specialist. He had reached the same conclusion as me, that I was having a Herx, although no one that he'd had on his trial had reacted like this; they'd had no reaction at all. He'd also been in touch with the Rep of the company that make the EBV & she'd not heard of anyone Herxing while taking it, in fact even the owner of the company hadn't come across anyone that had reacted the way I had! I'm a medical marvel! Haha! Basically,  we had completely underestimated just how sensitive I am & I was told stop taking it immediately.

The rest of this week was pretty much a right off. I felt like my body was using every single drop of energy it had to deal with getting rid of the toxins & I felt so weak. The pain in my lower back & my head were pretty bad most of the week, I couldn't stand much noise & being on any tech was a no go for the most part. I could barely sit up for long for the first half of the week, in fact I could sit up for the time it took to eat a slice of toast just so I could get my painkillers in me & then I'd have to lie down again.

From Thursday {28th} I began to feel like things were easing off a little & I could begin to sit up more & was able to read a bit. By Sunday/Monday, {31st/1st} I was beginning to feel a bit stronger but I was still being quite careful not to do anything, I knew my body needed every ounce of energy it could get. My specialist was on the phone or messaging me pretty much every day checking up on me, which I really appreciated & having the reminder that this was in the long run a good thing, really helped.
Herx Recovery Reading Material
Wednesday 3rd May

This was the day of my Specialist appointment & thankfully I felt just about well enough to travel & get there. I had no intentions of missing this one, as I needed to know what was going on & felt like my body needed some intensive Bioresonance treatment to help restore it after what it had just been through. During the appointment, my specialist checked how sensitive I am to the EBV medication; 1 drop I was okay with, 2 drop was too strong {I'd basically overdosed my poor body starting on 5!} So the plan was then made for me to start back in 1 drop, monitor closely how I was for a week & then if all was okay, to slowly try upping the dose. This method is hopefully going to desensitise my body to it.

I started this last week {8th-14th} & even on 1 drop I was essentially having mini herxes but as the week progressed, the strength & amount of time I was experiencing them was lessening. So under the guidance of my Specialist, I went to 1 drop twice a day on Monday {15th} & did the same Tuesday {16th}. My reaction to the second drop on Monday wasn't good, the pain & tingling was back stronger & lasting longer. Tuesday's reaction was even worse & I was feeling incredibly ill, experiencing flushes of tingling throughout the day & by night after my second drop, the nausea was bad too.

So here we are, Wednesday 17th May & I'm back down to 1 drop per day. I'll admit, I'm feeling defeated & mentally I'm struggling. I'm having to keep a close eye on all my symptoms & write everything down, which isn't a nice thing to have to do. I've never liked or kept a long term symptoms journal because of how it affects me mentally. But at the moment, it's a necessary evil as I'm having to give my Specialist daily updates & having it all in writing is helping with that. I've treated myself to a new notebook to make this process a little bit nicer. I mean who doesn't love new Stationery!?
New Symptoms Notebook!
Also I'm feeling pretty exhausted after dealing with yesterday, plus I had an appointment earlier in the day so feeling a bit of PEM from that. But these things take time & I'm use to having to take things slower & things not working out as planned thanks to my hyper sensitive body. Although I am feeling somewhat defeated, that doesn't mean I'm giving up on this. I'm going to persevere because in the long run, the EBV will help me feel better & that's all I want.

So that's basically what I've been dealing with this past month & why I haven't been posting as much on here & my social media. I'm sharing this because if it hadn't been for Sophia Galpin sharing her experience of the treatment she is having, then I wouldn't have figured out as quickly what was wrong with me. So if my experience helps someone else, as her did me, then this is all worth it in the end.

I hope you're all as well as can be & taking care,

 L xxx

Weekend Away: The Photography Show

I recently headed to Birmingham {UK} for a break away. Now Birmingham may not be at the top of the list for many as somewhere to visit but as The Photography Show was on at the NEC, it was the perfect choice for me. In fact The Photography Show was the main reason I was there, the show ran from Saturday 18th - Tuesday 21st March & we were there for Saturday & Sunday.

I set off on Friday lunchtime with my ever faithful traveling companion, my mum, & after 3 hours or so down the M6, we arrived at our hotel around 5pm. We ordered room service, showered & fell into our beds for not the best nights sleep {neither of us slept great for the entire weekend} I don't sleep great at the best of times but I'm even worse when I'm not in my own bed & the air conditioner bothers my poor mum, so she struggled. But that aside, we had a lovely weekend away!

The good thing about this show is that it's open from 10am - 5pm {A far cry from the person who use to do 6am-midnight 5 days at the Horse of the Year Show!} & MCM Comic Con is on at the same time so there's plenty of great photo ops; I regret not having my camera out as I walked into the NEC on Saturday as there were a number of Stormtroopers wandering around!

The first day at the show mainly consisted of a number of talks we wanted to listen to, perhaps too many, as I had to head back to the hotel at 3pm as I felt so unwell, missing most of the pro masterclass I had paid for & missing out on meeting a few photographers I know via Twitter. Despite that, I did tick a couple things off my small shopping list, {I upgraded my Nikon D3200 to the D7200}, listened to the wonderful Andrew Appleton give a talk/demo on Dance Photography & the fascinating talk by Ben Cherry about following the Bewick Swans from Russia to Europe & the roll Expedition Photography played in that.

Saturday was also filled with pride, happiness & excitement as I saw one of my photographs on display as part of Loxley Colour's The People's Gallery. {I may or may not have been fighting back the happy tears when I saw my shot of Jacob the Starling!} It was such a privilege to see my photograph surrounded by so many amazing photographers work, many of whom I know!

"Jacob" on display in The People's Gallery
The extra rest I had Saturday definitely helped get me through Sunday. I also made sure I had my camera out as I approached the NEC & I'm so glad I did, as I managed to get a shot of some Jedi! There wasn't as many talks we wanted to listen to, so I had a good break in the afternoon, which I used to go back to my hotel for lunch. Plus all but one of the talks were at the Nikon School Stage, so I didn't have to rush from one stage to another {like Saturday} The last talk of the day was at the Mobile & Social Media Stage {think that's what it was called} & it was all about iphonography/phone photography Although I'm definitely a DSLR user, it inspired me to start using my iPhone to take photos again.

More Force Needed!
I also picked up a couple more pieces of kit, including a 50mm prime lens & spare battery {which I traded my old nikon camera against, sad but happy times} & a roller travel case {carry-on size} for my camera kit, this was a "not on the list" item but packing for this trip made me realise I needed one! Also being the bookworm I am, I had to stop at the ilex camera book stand & pick up a couple of books. Sunday ended in the same way the other days had; shower, room service & not much sleep.

Monday was our leaving day, we had an incredibly relaxing/quiet breakfast {we were in a dinning room with only 4 other people!} which was just what I needed. Since I had packed pretty much everything the night before, I could rest up longer until we had to checkout at 12pm. I did have a wander down to the Hotel's Costa for a hot chocolate & took a few photographs of the lobby to try out my new camera & lens a bit more. The weather & myself weren't up to going for a wander outside to the nearby Lake, which I did last year. Not long after 12pm our lift home arrived & after 3 or so hours back up the M6, I crawled into my bed & snuggled up with my cats.

hotel Lobby Life

Despite spending all of last week {and parts of this week} dealing with the after effects {PEM} that comes from going away & doing so much, I enjoyed every moment at the show & being away. I'm still not fully recovered from my trip but since last Friday I've attempted a couple of things just to test out what I'm able to do/not do as to where my PEM level is & how long it'll take to ease off completely.

It can be so frustrating paying so severely for the things you want to do, which is why you have to make sure that the things you use your precious energy on are completely worth it to you & don't ever let anyone make you feel guilty for what you spend your energy on!

So to sum up, I had a fabulous time away, a holiday I definitely needed after a rough 6 months health-wise!

I hope you're all doing well & taking care,

L x

{If you want to see more of the photographs I took while away, then head over to my photography Instagram: l.e.sphotography }

Guest Post: Donna Owens ~ Yoga, My Bed & M.E.

Since I was away last weekend & spent the week recovering {I will write about that} I thought I'd share a guest post written by the lovely Donna Owens who owns Yoga, My Bed & M.E. I have a couple of Donna's Yoga guides & really do help my poor tired body!
Here's Donna's inspiring story...
Since I fell with M.E. in my teens way back in the 1990s, the one thing that kept me sane through the endless days of being house bound or bed-ridden was stretching to ease the pains in my legs and body, to help my body feel awake even if my mind was on another planet. I would take a pillow and hug it tight while bending forward on my bed with my legs out-stretched, it was my go to place to find relief and comfort, most times I would be awake at 3am and do this pose, tears rolling down my cheek, exhausted as I wanted sleep, cuddling my pillow tight to try and get some rest.
I didn’t know of Yoga at the time or the fact I was kind of doing a Yoga pose, I just knew stretching was a massive sigh of relief to my mind and body, I felt more open, lighter, warmer and cheerful, even if it was just a few hours. If I didn’t do any stretching for a few days my body would crave it, and I found aches and pains would feel worse, my shoulders, neck would feel rounded and my whole body felt as though it was shrivelling up and turning to stone; stretching was the antidote.
At 19, I finally found `proper` Yoga. I got a book and some videos, if I am honest I most likely wanted the body that came from yoga, M.E. was then was manageable, I was living with it rather than it controlling my life, as I was told Yoga was great for health I thought I would go for it. I thought the more I did, the healthier I would get, my ego wanted the pretzel legs and lean limbs. I wanted to feel great in my own skin for the first time, trying to catch up on missed years going out with friends. The Yoga videos and eventually DVDs (mum took a while to get with the times!) were all the 90's fitness craze!
The one problem for a M.E. sufferer - they were all power fitness workout Yoga! But I pushed through them, most days repeating to myself “it`s Yoga, it’s great for health.” You can guess what happened? Soon enough the M.E. kicked in and I was back to square one; in bed with legs out stretched cuddling my pillow with tears rolling down my cheek. I learnt I had to work the Yoga that I loved around my M.E. and not the other way around and that’s what I did on and off for next 12 years.
Then, after living a healthy 12 years out of the blue came my biggest relapse ever! It hit me just like that, no trigger, no warning, no nothing. The frustrating part was the fact I couldn’t think of anything that could have brought this on, as well this time around I was an adult, with work, a home and a daughter to look after and keep making rest and a short recovery near impossible. I took my broken body to bed and switched off from everything for a while. After lots of tears and worrying, I released all the negative emotions and started to think clearly and productively. I wrote everything down, the good, the bad and the ugly and soon pieced together a way I could make this all work. I was already a qualified Yoga therapist, I had years of M.E. experience, I always wanted to tell my story and help other people with the illness so, that’s what I did!
I set up my own business: Yoga, My Bed & M.E. to help and share my story via social media. I had no idea where it would lead, between M.E. days, posting, making friends and writing my book it all fell into place like it was all meant to be. I realised, I was meant to get this bad relapse to knock me off my feet to find my place in the world. To re-learn the illness, the dos and don`ts, the hard times to understand, and being able to modify Yoga poses so that they were easy on the body for M.E. warriors, as I spent years doing yoga on my bed. It was only right that I made all Yoga poses to be safe and which could be done on the bed, this way the body was supported, energy was saved from not having to stand or even get up for those who spent long hours in bed. Pillows and blankets could be used to support joints. After all these years, with Yoga still being popular, I was shocked that there was still hardly nothing suitable for M.E. which was attainable for the bad days as well as the good (ish) days.
So, here we are, one year later. Six Yoga guides, over 2,000 followers, a 5-star Amazon book, Yoga poster and a new YouTube channel! It’s been an amazing year, despite it being my worst year for M.E. But now I look to my illness as my business partner, guiding me and helping me to create ways to help and support others around the world and I couldn’t be more happier.
So, if you feel that there is no hope, stop, listen and believe as there are moments of magic in life!
Here's where you can find Donna on the interwebs:
Buy Donna's book on Amazon