Weight & Medication

{This has turned into a longer post than I intended but I wanted to give some background along with my weight & medication issues now. So grab yourself a drink, snuggle up & if needed, pace yourself while reading this.}

{Disclaimer: This is my experience, everyone is different & medications can effect people differently. Always consult your Doctor before making any changes to your Medication}

Since being a teenager, I've struggled with food & controlling my weight. I can remember going from surviving a school day on nothing but a bottle of water, an Orange & a Kitkat to binging & comfort eating when I was in my early twenties while struggling with stress & Depression.

So when I was diagnosed with Hypothyroidism at 22 years old, it made controlling my weight harder but not impossible, especially when my TSH & T4 levels went back to normal once the medication kicked in. However, as I mentioned above it was at this time I was struggling with a few issues & as a coping method I began to comfort eat.

Fast forward 4 years & I had left my job, one of the main causes of my stress & I decided I needed to do something about my weight. I'd previously tried Slimming World & Weight Watchers but I barely lost anything, so I did it the tried & true way; I calorie counted & worked out until I'd lost 6 stone! I carried on watching my calories & working out a lot to help maintain the weight I now was. 

It was at this time that I really knew something was wrong with my health as you'd think I should have been feeling incredibly good for dropping all that weight, but I wasn't. Eventually I was diagnosed with M.E & told to slow down, which meant I had to stop working out. However, as the M.E worsened, I began to lose more weight due to my body not absorbing nutrients properly, losing my appetite & struggling with nausea which meant I had to force myself to eat each day - having medication to take to for my Thyroid, Anaemia, to help with pain & nausea helped encourage me to do this.

Copyright 2017 Louise Elizabeth Shepherd

Fast forward again a couple of years while having Bioresonance & I found I was seeing small improvements with my weight. Now I'm only 5ft 2inch so being lighter weight wise is much better for my frame & height, plus it means less weight on my painful joints & muscles. But as I'd lost quite a bit due to being really sick, I didn't mind putting on a few pounds as I felt quite boney at one point, even though I never really looked it.

However, at the end of last year I had put on more than I really wanted but I wasn't entirely sure how since I wasn't over eating. Then all was made clear after a routine blood test; my Thyroid levels were out after being fine for a good 10 years & this was the cause of my weight gain. I then spent the next 9 months having blood tests every 3 months & having my Thyroxine increased until in May of this year my Doctor was finally happy with my TSH & T4. Not long after that I had all the Herxes & I barely ate anything for a good couple of weeks, just enough to take my medication & yet I lost no weight, in fact I put a bit more on.

I found this completely baffling & since a number of years previous I had lost a good 3 stone mainly with Calorie Counting before I upped my work outs, I knew I shouldn't have been putting on weight. I wasn't sure what to do as working out for me now is a major no no & even my trusty detox Green Tea wasn't shifting the weight like it had in the past.

Then I came across a post on an M.E Support Facebook page asking if anyone else had experienced weight gain while taking Naproxen {the pain killer I was taking 3 times a day} & I was surprised firstly that someone had linked weight gain to Naproxen as it was the last thing I would think of as contributing my weight & secondly, how many other people were saying it made them gain weight too!

Copyright Almaz A Source: Instagram

So I did the one thing you're told not to & began to Google Naproxen & came across so many more people who were/had been taking it & found they put on huge amounts of weight in a short time. I also read up on the chemical make up of the drug & it's basic make up is linked to Salt. So from what I understood, this means it can make you retain water & this seems to be the reason for the weight gain.

Up until the past year, I wasn't taking Naproxen as regularly, it was my "last resort" medication as I didn't like taking it as I don't handle certain pain killers well {including Naproxen} & so I would just manage on paracetamol & Ibuprofen. Then I found my pain worsened & I ended up on Naproxen twice a day at first & then my Doctor upped my dose to three times a day after the Herxes as my pain level was much higher. It was at this point that I really noticed how quick I was gaining weight despite my low calorie intake. Yes, like everyone I would enjoy the odd take away & sweet treat but not at the amount that would cause me to gain weight so quickly!

So I made the decision to come off of the Naproxen at the end of August & go back onto Ibuprofen. I was back down to two a day by this point & even though Naproxen isn't addictive at all, I decided instead of suddenly stopping it, I decided to gradually lower my dose over a couple of weeks. This would give my body time to adjust to not having as much of it & time for me to adjust to the new level of pain I would now be experiencing. Naproxen did a pretty decent job of masking my body's pain & I knew the Ibuprofen didn't do that as well.

I did a week on one Naproxen at night & Ibuprofen during the day. Then I went down to one a day, miss a day for a week & then I came off the Naproxen & back fully onto Ibuprofen. The first week was pretty rough pain wise & it took a little bit of getting use again. Now I can definitely tell when I'm ready for my next dose but for the most part I'm dealing with my pain level better than I was when I first began to come off it. But the extra weight isn't good my body & I also feel better in myself when I'm lighter so personally, coming off the Naproxen & dealing with a higher pain level is the lesser of two evils.

I've not been fully off Naproxen for a month yet but I've already dropped 7lbs, granted I've also made some massive changes to my diet in this time as well as I'm back to counting calories more closely than I was & I'm now Gluten free & I've lowered my Wheat, Dairy, Egg & Meat intake as well, which I'm sure has contributed to the weight loss I've seen. That being said, I'm certain coming off Naproxen has played a massive part in this. Once my Thyroid levels were stable, I tried to lose weight but barely lost anything {remember I lost 6 stone with a medicated Underactive Thyroid} all the while continuing to take Naproxen & being really baffled as to why I was gaining weight. Now I've come off the Naproxen while watching what I'm eating, I've lost more weight since the end of August than I have in this past year when I've tried too!

I'm sorry this has turned into a much longer, more detailed post than I intended & if you've made it this far, I'm very grateful you have, well done! The reason I've ended up writing this much is that I hope my experience with weight gain & medication, particularly Naproxen, will help someone else who maybe taking it too & noticing their weight is increasing for no other obvious reason.

I'm not recommending anyone should stop their medication if you feel it's causing you to gain weight, you need to do what is best for you & your body.  I struggle with body image; loving myself doesn't come easy {thanks Anxiety & Depression!} & being comfortable in my own skin, especially when I'm heavier isn't easy to do either. {those following me on Instagram may have noticed the lack of selfies in the past year or so!} But I also feel the extra weight is having a strain on my joints & muscles, so coming off the Naproxen to help me lose weight isn't just about body image & being thinner, it's beneficial to my Chronic Illnesses & my Body & I know I'm strong enough to take the higher pain level, I've dealt with it before & I'm now doing it again.

Last "Selfie" I posted in May 2016 when my self esteem was much better.

Really do hope this has been helpful to any of you out there struggling with a similar situation, please know you're not alone & if you think your medication is causing weight gain, I really do recommend consulting your Doctor before doing so, especially if you're taking anything stronger than Naproxen.

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

L xxx

Buddy Box - The Blurt Foundation

I came across The Blurt Foundation quite a while ago now on Twitter & they are an organisation dedicated to giving support to people mainly with Depression. They are a good hub of information for anyone dealing with other mental health issues, such as Anxiety & Chronic Illnesses as Mental & Physical Health can sometimes run side by side & seeking help for one, can sometimes help you manage & cope with the other.

Their website is fantastic, it's really user friendly & from the moment you see the home page, to me, it feels like a safe caring place. The tag line you're greeted with is "We are Blurt, and we're dedicated to helping those affected by Depression." You can sign up for their newsletters, which are lovely to receive; they're full of encouragement & make you feel like you're not alone in how may be feeling.

Buddy Box

Although I've never spoken about it in detail on here or really anywhere else, I do suffer with bouts of Depression & Anxiety seems to be a constant companion, so when Blurt came on my radar, I decided to check them out. The information & articles on their website are wonderful & I've especially found their free download "Self-Care Starter Kit" very helpful on the days I'm struggling mentally.

As they are a foundation, donations & sales from their shop help keep them running. The shop has lots of lovely items to purchase from colouring books to pin badges, all of which are aimed to encourage self care & help ease the daily struggle living with a Mental Illness can be. One amazing resource they sell is their very own Subscription Box aptly named the "Buddy Box". I've had this little box on my "to buy" list for a little while & in August I decided to pre-order the September box. It arrived this Wednesday & it's timing could not have been more perfect, since the day before I had gone through the most horrendous PIP Medical Assessment & receiving the Buddy Box was just the pick me up I needed.

List of Contents 

When I opened the package, I was greeted with a lovely embossed lid & when I took the lid off, the items were wrapped up with a really cute paper. The top item was a little card which had a break down of the contents of the box & also how much they cost. I really liked this as you can see what has made up the price you've paid & you know that the box isn't being over priced.

Box Contents

I have to admit, I was little overwhelmed by the quality & range of the products. Inside the box was a little postcard, water flavouring, The Blurt Foundation Zine, a pack of "You Are Enough" cards, 3 Laptop vinyls, a pen & The Little Book of Kindness. The quality of all these products are very high & you can tell that a lot of thought has gone into putting the box together.

Book & Pen

The great thing is that everything in the box is useful in some way or offers a little pick me up when you need it; For example, I've got the Pen clipped onto my planner, one of the Laptop vinyls on my Mac & the Kindness book sat on my bedside table ready to read. I've had a quick flick through it & it seems like such a lovely little book, full of useful & thoughtful ideas to spread kindness around - to yourself & others.

You Are Enough Cards

I think I mentioned this point in my "Yoohoo Mail" review, but a lot of the Subscription Boxes you can buy, although filled with lovely things, aren't always great value for money for myself, as I have quite a few sensitivities so bath or food products or highly fragrant items I can't use myself. Though they do mean that I can pass on some loveliness to others by gifting them, so that is a win & they don't go to waste. However, it is a little disappointing when you might only be able to use say one item from a box that you were looking forward to as a treat. So the Buddy Box is good one to keep on your list if you've got a numerous sensitivities like myself & are looking for a treat.

Laptop Vinyl

Overall, my first impression of The Blurt Foundation's Buddy Box is that it's wonderful & I definitely agree with how they describe the Buddy Box on their website: "A hug in a box!" At £21.50 it could be classed as a mid-range priced Subscription Box. Some may think that is a little pricey, especially for someone who doesn't work & has to prioritise what the money they have goes on & I will completely admit that I was one of those people. However, after deciding to treat myself to one these boxes, I can wholeheartedly say they are great value for money & a lovely little treat.

The nice thing is that you can buy a one off box if you don't want or can't justify committing to £21.50 every month. They would also make a lovely little gift for a family member or a friend who maybe needs a little pick me up.

If I've sparked your interest in the Buddy Box & The Blurt Foundation, I've listed below all the places you can find them on Social Media. Whether you have Depression or know someone that does, I really do recommend checking them out as the information they provide is so helpful & I'm incredibly grateful to have come across them.

Website: The Blurt Foundation
Twitter: @blurtalerts
Facebook: The Blurt Foundation Page
Pintrest: The Blurt Foundation Pin Boards
Instagram: @theblurtfoundation

I truly hope today has been a kind one to you all, please all of you take care.

L xxx

Rainbow Box Club Review

Rainbow Box Club September Box

About a month ago I received a follow request on Instagram from the Rainbow Box Club. When I checked out their feed {something I always do before accepting a request} I saw that they were a Subscription Box company due to launch their first box in September. Out of curiosity I accepted their request & followed them back.  I pre-ordered my box once they were available.

Like most Subscription boxes, you can either subscribe for a set amount of months or buy a one off box, I did the latter, which was £15. If you subscribe for either 3, 6 or 12 months, you pay £14. They also offer 10% off your first box when you subscribe to their newsletter.

So you're probably wondering what type of items are in the box & when it arrives?  Well the box arrives at the beginning of each month & according to the website each box will contain some items of stationery, prints, paper products, magnets, pens, food, jewellery & other lifestyle & homeware products.

Item List
Pretty wrapping!

My box arrived on Wednesday & when opening it up to see what I'd received, I was greeted by a bright pink package with a doughnut sticker sealing it & also an item list on the inside of the lid. I thought this was a lovely touch as it had the details of the companies where a couple of the items come from.

Sweet Treat Items

The theme of the box was "Sweet Treats" & all the items were food related. In this first box I received; a couple of planner sticker sheets, a Jammy dodger coaster, a doughnut pin, a doughnut iron on patch, tea & biscuit earrings, a print & some wax melts. Everything is good quality & just looks happy bright, which is fitting since it is the Rainbow Box Club!

Close up - Coaster, Iron on patch, pin & earrings

My favourite item is definitely the Jammy dodger coaster & the one I'll get the most use of. I also really love the little tea biscuit earrings & I'm so sad that they aren't gold as I can't wear them. So these along with the other items will be gifted to someone else as personally I won't use them & I don't want them to go to waste.

Wax Melts look good enough to eat!

I like my reviews to be as honest as possible & so a word of warning for those of you reading this with sensory sensitivity like myself, especially if you're sensitive to strong smells, the wax melts smell very strong & I've had to move the box into another room as the scent of them is a bit too much for me. However, if you're fine with stronger scents, then you'll love them!

Overall, my first impression of this new Subscription Box on the block is a good one. It makes a nice little treat for either yourself or for a friend as there is the option to gift the box to someone else. Pricing wise I think £15 {including delivery} is very reasonable, especially if you added up the cost of everything & it fits nicely in the lower end of the Subscription box market, making it a box that most people could afford as a treat now & then if you don't want to commit to a subscription, like myself.

If you're interested in purchasing your own little Rainbow Box, then head to www.rainbowboxclub.com You can also follow them via their social media pages:

Twitter: @rainbowboxclub
Instagram: @rainbowboxclub
Facebook: Rainbow Box Club Page
Pintrest: Rainbow Box Club Pin Board

Hope everyone is doing well & taking care,

L x

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