Stuff… So much stuff!

I’ve previously posted about how my partner and I are currently saving for a deposit on a house. In the meantime, I’ve decided to rid myself of all the horrible, tacky Ikea furniture I have (tallboy chest of drawers and a wardrobe) in favour of some real, antique non-flat pack furniture.

We’ve decided on the Victorian era with regards to wardrobes and chests of drawers and gothic revival slash arts and crafts for our bed and other items of furniture (jardiniere stands and such) and we’re now scouring the country for bits of furniture we can actually afford.

Unfortunately for me, I currently live in a terraced 3 bed house built in the 1970s so it isn’t blessed with the Victorian treatment in ceiling height and room size. I’ve just found out that the tall boy chest of drawers I’ve fallen in love with won’t in fact,  fit up the stairs in my parents house where I’m currently residing (we can tell by looking, even without the Ross from Friends’ “PIVOT…. PIVOT…..”)

To say I’m gutted would be an understatement.

So, it’s back to the drawing board and I’m now left with a large hole where my hideous Ikea chest of drawers sat until 2 days ago when I sold them on a facebook group to a very happy lady. If I could find a Scottish Victorian chest of drawers that will fit up the stairs and round a corner, you’ll be the first to know!

Planning for the future also puts into question your past. At least, in my case, my past that is currently sat in multiple vintage suitcases on top of (previously stated) hideous Ikea wardrobe. I have collections of CDs from when I was 17 and a member of the band HIM’s street team; I have all the Ozzy and Sabbath CDs I collected in my youth, I have memories in the form of STUFF – so much stuff and so many memories.

But what do you do with all those memories? My loft (or rather, my parents’ loft, which I have temporarily commandeered) is chock full of memories too – my rail of 1940s and 1950s clothing that I will never get rid of, 1950s furniture that I loved and now hate and can’t shift, suitcases full of winter clothes/summer clothes depending on the season and even more mementos all tucked up in various sized boxes…

You know the things… the keyrings you bought on a trip to the seaside with your best mate from high school, and the coat you wore at your fattest (yes, I do still have my ‘fat coat’) and the clothing you used to wear but don’t so much any more, but still won’t throw out because you might some day…

I’m now facing a rather hard decision about what will go and what will stay. I simply cannot keep it all, I simply don’t have the room.

How do you know which mementos to keep and which ones to throw away?

 

 

Waiting, waiting, forever waiting

I feel like I’ve been waiting for something my entire life; waiting for an appointment, waiting for painkillers to kick in, waiting for the side effects to wear off…

We spend our whole lives waiting for things, but it never gets any easier, does it?

Some people are fantastic ‘waiters’ – they could wait patiently for hours, days, weeks or months for something they really want and are happy to wait. Others are impatient and they want it now. Instant gratification and all that.

What’s worse, is being one of those people who has waited, patiently, dutifully to oneself because they know the wait is worth it, but at the same time being one of those types of people who hates waiting and wants it  when they want it.

In this instance, I’m talking about waiting and love.

As a teenager, I was awkward, geeky and plump. I wasn’t holding the reins when it came to puberty and I wasn’t exactly admired (at least to my knowledge) by the boys. Everyone around me seemed to have a boyfriend or girlfriend or had at least, ‘snogged’ nearly everyone in our friendship group. I was always on the perimeter, watching, listening to their stories and the gossip about who snogged who at the last house party.

There, I remained on the outskirts of ‘love’ or at least, affection. I was waiting patiently for my turn – my turn to be admired by the opposite sex and waiting for someone to like me back. I spent most of my teenage years yearning for a male friend who I thought was beyond handsome and funny and so charismatic. If there was such a thing as the “friend zone” back then, I was definitely firmly in it. Every girlfriend he had, I hated. It tore me up. For years, I yearned for him, waiting for him to finally see me in the same way he saw the other girls in my year. It never happened.

I waited until I was nearly 17 for my first kiss. I won’t say much about it, other than it wasn’t with a particularly skilled gentleman and it was such a traumatic experience, I ended up waiting many years after to build up the courage to kiss another frog.

I’d gotten so used to waiting, that I made a name for myself. I entered college at 19 and became friends with a small group of girls a few years younger than me. I would be introduced on nights out to guys in the local nightclubs and bars as the Virgin of the group. Being known as a 23 year old virgin never bothered me, but I would cry myself to sleep every night feeling unloved and for being untouched by a man and the pain of having to wait for so long to have what everyone else was having.

My talent for waiting didn’t end there. I finally lost my virginal status at the ripe old age of 23 because I had stubbornly decided to wait for the right guy to be my first proper boyfriend. I was waiting for something that not many people I know had waited for – maturity, a sense of self worth and confidence. I wanted to be happy in myself before I gave myself to another and by then patience was definitely my forte. Unfortunately, it wasn’t meant to be and a year later, absolutely heartbroken, I knew I needed to take the time to reacquaint myself yet again with patience.

Well, I’m definitely not 24 any more and interestingly, the older I get the more I lose my ability to wait; to be patient. I feel like I’ve spent so many years of my life waiting to be happy, or waiting for someone to love me… that now I have all that, I want to stop waiting and live my life. I put my love life on hold when I was younger because I wasn’t happy with myself… I changed what I wasn’t happy with and I no longer ‘had’ to wait.

The hardest lesson I’m learning right now, at the age of thirty, is yet again – patience.

Two years ago, I met a beautiful man with long blonde hair, a pretty face and a wonderful soul. Amazingly, he fell in love with me and I with him. Unfortunately for us (and unlike our peers) we don’t come from monied backgrounds and so we’re having to save up to move in together. We both decided after just 6 months or so of being together that we wanted to live with each other, and so we began collecting things for our house. We have tea towels and mugs. We have cutlery and pots and pans. We have a bed and a coffee table. We have lamps and light fittings. But we don’t have a home… yet.

It’s horrible isn’t it… the more you want something to happen, the harder it is to wait for it. I’m so tired of waiting. I feel like I’m being tested constantly and I don’t know why or by whom but I do. I feel like I became such an expert at being patient, that someone is now laughing at me, making me wait once more, purely for their amusement.

I don’t know how long it will be before we can move in together. I don’t know how many more Sunday nights I will cry myself to sleep because he’s not there. All I know is that I don’t want to wait any more. I am sick and tired of waiting, always waiting. I can see our life together in my mind and it looks wonderful. Just how long I’m going to have to wait, is yet another question that will remain unanswered. For now.

Yours Patiently,

Beth Von Black.

 

 

The house we don’t have yet. 

My partner and I have been planning on living together from around 4 months of being together. We decided very early on that we were serious about each other and from then on, we’ve been collecting things for the house we don’t have yet. 

To say we’re an unusual couple would be a slight understatement. I am what most people would call a ‘goth’ or ‘greebo’ and my boyfriend also has an alternative look; long blonde hair, beard and rarely without a metal tshirt on. 

Living as a couple has been our plan pretty much from the start and it’s been a wonderful experience over the past two years collecting things for our home to be. We both decided that we didn’t want a flat-packed home from IKEA or Argos. We are passionate about old things, antique furniture and things that have held the test of time. 

We bought a gothic revival Victorian octagonal table and drove many many miles to the Peak District to pick it up. We bought a beautiful black Victorian dresser from a man whose wife wanted more modern furniture (thank you very much!) and we have a writing desk and wall mirror to match. 

Our latest purchases were a French ecclesiastical antique candle stick and a wonderful planter that I’m now looking for a stand to put it on! 


We’re definitely going down the Victorian route with our decor. Think, dark coloured walls, dark furniture and lots of candlesticks. I’ve been obsessed with taxidermy and curios since childhood so it was a huge relief to have a partner who also doesn’t hate my love for the macabre. 

At the moment, because of the planter we’ve just found, I’m in the middle of researching which house plants I’m least likely to kill and which house plants were most popular during the Victorian times. I’ve settled on a Boston Fern for the planter above. I love ferns. 

Here are some more images of things we’ve bought for The House We Don’t Have Yet. 

New Project; Handmade Scented Soy Candles by Von Black

When I was around 16 my Dad helped me to make some candles. It was a fun little project we did together; we shopped in charity shops for loads of pretty glasses, used turkish coffee jugs to melt the wax and they ended up looking pretty fantastic!

So, with my little bit of candle making experience, I’ve decided to give it another go – this time, with a little bit more finesse. I’m stocking up on some very interesting essential oils and I hope to create a small batch of handmade, scented soy candles with a dark edge to them. I am so excited to get started on my next project… Watch this space.

Paris, Prague and Budapest

As I’ve posted before, my partner and I are keen travellers. We’re both extremely inquisitive people and we both share a love of seeing what the world has to offer.

In March this year, we went on a 6 day jaunt across Europe. We decided to visit three countries and spend 2 days in each country. 

First, we got the Eurostar from London to Paris. We stayed right by the Gare Du Nord as I needed to walk as little as possible. We visited the Eiffel Tower, Notre Dame cathedral on Easter Sunday and queued for HOURS to see the Paris Catacombs…


Here are the Paris Catacombs


Notre Dame Cathedral


We then flew from Charles de Gaulle airport to Prague airport. We stayed at the 4 star Hotel Yasmin in Prague. It was beautiful and the best breakfast I have ever had! We booked a taxi into the old town and had a mooch around. I found this amazing little bric-a-brac shop and if I had more space in our suitcase I would’ve easily spent a small fortune in there! It absolutely threw it out with rain while we were in the old town so we jumped into a doorway to find it was the entrance to a museum of medieval tortue, so of course we had to go in!


Prague was sensationally beautiful. We most definitely want to go back and stay nearer the old town as there was so much to look at and so little time to do so. I watched a documentary years ago about an ossuary in Prague and ever since then, it has been on my bucket list. Knowing this, my partner took us on the train out of Prague and towards a town called Kostnice to visit Sedlec Ossuary.

After 2 days in Prague we packed up and flew to Budapest. We stayed in a rather grand looking Novotel Centrum. 

We found the most amazingly hipster restaurant in the Jewish quarter in Budapest. It had a library! And served the most beautiful Hungarian wine called Bull’s Blood. Divine. 

I feel I need to describe how difficult it was for me, physically. I’ve written before about having Ehlers-Danlos Syndrome so I hope by now you’re not surprised when I say this holiday really took it out of me! We stayed two days I each country so I could sleep and rest on the second day. The pain rehab would call this ‘boom and bust’ but I call this ‘real life’. 

There is no real way you can pace yourself on holiday like this. We made sure I had a box full of painkillers and heat pads and I travelled with all my splints and walking stick. I sat down on anything and everything I could put my butt on and went to bed early every night. I took a nearly an entire week of rest to recover from the travelling (well, as much as I recover anyway!). 

This is the only way I’ve found works. Others may pace themselves or go on beach holidays but I refuse to. Firstly, I hate the sun (don’t like being tanned) and it makes my POTS worse. European breaks are ideal in terms of short flights and semi-decent weather. 

Our next trip is in December when we fly to Basel in Switzerland then two days later we fly to Freiburg in Germany. It will be snowy, wintry and Christmas markets galore! I cannot wait! 

I made this…

A few weeks ago, my partner and I signed up to an adult education 1 day course in Stained Glass making. We’re quite a creative couple and are always looking for things we can do together. This one day stained glass course was a no brainer – we both adore churches and cathedrals, especially for their incredible stained glass windows. So, we thought we’d have a go at creating something of our own!

I was quite nervous when we got to the adult learning centre. It all seemed quite daunting looking at all the tools and equipment laid out before us.

The tutor started by explaining the difference between different types of glass, cutting, staining, painted glass etc. Then we went through the usual ‘elf n safety stuff and we got on with our creation.

I have to say, I really struggled cutting the glass. My hands aren’t very strong at all and I suffer with chronic and acute pain in my fingers and wrists. You do have to press really quite hard and keep it smooth at the same time using a glass cutter like this one:

toyo-tc10p-glass-cutter-1.jpg

I don’t think I’d recommend glass cutting to someone who struggles with their hands! I shan’t be making any more stained glass panels, I don’t think.

Anyway, we cut the lead came (the silvery metal stuff that hold the glass in place) and placed it all together ready for soldering.

BN-GD260_1222ST_H_20141222170518

An example of soldering Image taken from search engine

Soldering looks easy, but is actually an art in itself. It is so easy to make it look awful, as I found out. I’m hoping I can file it down a little, polish or paint it up and hide some of my awful soldering, but anyway…

I made this!

image1image2image3

 

 

 

New Beginnings (the end of Stanmore)

It’s been two weeks (I think!) since I gave my room key back to the Mercure reception and said goodbye to my new friends and goodbye to the room that had been my own little bit of heaven for the last three weeks.

I knew I wouldn’t be able to keep up with writing the blog during the three week programme, so I thought I’d give it some time and come back to the blog with a fresh perspective of the last few weeks…

The Pain Management & Rehabilitation programme run by Stanmore was an experience unlike any other. The first question the Psychologist asked me in my first one to one session was about my expectations. I had absolutely no idea what my expectations were because I knew so little about what the programme actually entailed. I’d had a brief powerpoint presentation at the pre-assessment and it was so vague I really didn’t know what to expect.

One thing in particular I didn’t expect, was to meet such an incredible group of women. There were 7 of us originally, but one lady left after the first night due to her being scheduled for surgery, so we were then down to 6 ladies (or patients, as they call us – which was strange as we were all staying in the hotel, rather than patients on a ward).

I have never met such an interesting, diverse and strong group of women in my life – the most amazing part of the course was spending time with a collective of women who all shared the same ‘secret’ – we’re all in pain.

Pain is such a funny topic. There isn’t a single person in the world who doesn’t know what pain feels like, yet there isn’t a single person in the world who knows what YOUR pain feels like – and that’s rather extraordinary, if you think about it.

Living in constant pain is horrible, it just is. But, when you meet other people who also live in constant pain, something happens. Personally, I found compassion (that I didn’t know I had) and empathy (again, another emotion I struggle to access) in bounds, not only coming from myself, but I also recognised it in them too. One grimace on my face and they knew instantly I was in pain. It’s a wonderfully comforting experience.

The programme ran from Monday morning to Friday afternoon for 3 consecutive weeks and all but one ‘session’ was based at the hotel. We were all given rooms close to the St Andrews and Cambridge suites that were used for the theory based seminars and the Physiotherapy and Occupational Therapy sessions. We were all given timetables at the start of each week with all our sessions mapped out for the week ahead.

The first week started relatively slowly and then the second and third weeks were busier, as we’d become more accustomed to the routine of the programme.

There were a few issues with the programme, mainly to do with the hotel itself – the hotel pool (which we had access to during the whole programme) had heating problems and so we had to miss out on a couple of hydrotherapy sessions – 26 degrees wasn’t pleasant.

The other issue was with the kitchen – the programme is on a full board basis so all food was included, but the kitchen staff weren’t exactly happy (or knowledgeable enough) to deal with two of the ladies’ dietary requirements (gluten free / low FODMAP diet) and it was a traumatic event every night trying to get them fed.
I  wasn’t too happy eating from one restaurant menu for the whole three weeks – there are only so many falafel burgers you can eat before you get sick of them and only so many portions of chips you can eat for lunch before you start to pile on the pounds!

The programme itself has been a huge help to me personally, although I had already set up a lot of my own coping mechanisms in the 10 years since I was diagnosed. For example, relaxation and meditation were already a large part of my life so I felt like a few times it was a bit of a ‘teaching a granny to suck eggs’ situation, especially during the ‘nutrition’ session, but I realise I’m probably in the minority and that a lot of people will really benefit from what the course has to offer.

The occupational therapy sessions were interesting but I wouldn’t say all that helpful for me personally. Firstly, I don’t cook (I hate cooking and I’m lucky that my partner cooks for us!) so there wasn’t much they could teach me in that respect. I can’t hold a pen or pencil so the mindful colouring session was a bit of a miss too, but some of the other ladies found it really helpful.

The first OT I had (we were given a different OT after the first week, which was great!) wanted to change my sleep routine but I was assertive in that I was happy with the routine I currently have and would rather focus on other potentially ‘unhealthier’ parts of my life to change.

I will stress that the buzzword for this programme would be ‘change’. I have no problems with change (I get bored easily) but there are some things I’m not willing to compromise on and sleep is one of them. I’m sitting here writing this blog at 2am and that’s just how I work; my creativity hits a peak at this time and that’s just how it is.
If I was to have a 9-5 job, my routine would change and I’d suck it up, but I cannot work and therefore I have the luxury of living to my own rhythm, not society’s. (End rant!)

Another big aspect of the programme is learning about pacing. You’ll hear the term ‘pacing’ a lot if you join chronic pain groups on social media, but hearing about it and then being taught how to do it, is another thing entirely!

Pacing is where you work out how much of an activity you can do, and then changing your position (or stretching, or changing how you carry out that activity) so that you interrupt the pain before it hits you. I had already started pacing some activities before I started the programme. For example, my partner carries a fold out stool with us when we go on holiday or go to a castle or historical house. I make sure I have something to sit on at regular (or sometimes random) intervals so that I don’t get exhausted too quickly. It means then, that I have more energy to do more/see more.

One thing about the programme I will rave about is the physiotherapy. Before starting the programme I was most excited to get the chance to work with a physiotherapist who knows about Ehlers-Danlos Syndrome as I have had such terrible experiences with physio over the years. I was right to be excited, as the physio I was appointed was fantastic. She was so knowledgeable and personable and I felt really comfortable with her. We discussed my current problem areas (shoulder and lower/mid back) and my love for yoga and pilates (and how I struggle to exercise during a flare-up) and we created a yogalates routine I can do every day as my physio, which incorporates both my shoulder and back problems. I’ve been able to do my physio every day since finishing the programme (thanks to having  an enjoyable physio routine and partner who reminds me to do them every day!)

It’s been two ish weeks since the programme finished and life has gone back to ‘normal’ – I am still struggling to pace some activities that I do most – like using my laptop and watching TV and DVDs on my laptop, but I’m sure in time and with practise, it’ll get easier.

The weirdest thing is not having the other ladies around. I say ladies, I mean friends. I truly feel honored and blessed to have been put on the programme with each and every single one of them.

Stanmore: Pain Management Rehabilitation Programme Day 2

Woke up just before my 7:55am alarm went off this morning, which is rare. So I watched some morning news and waited for my breakfast to arrive at my door. Unfortunately the breakfast was disappointing, so I’ll make my way to the restaurant for breakfast tomorrow, even though I’m phobic about buffet food. I can have as much as I want when it’s buffet – I had 4 mini croissants and a big bowl of plain yoghurt – no granola as they’d run out and you can’t eat plain yoghurt on its own, it’s hideous!

So after breakfast it was time for a ‘Your Move’ session which was a basic relaxation/stretch class – lasted about 15 minutes then I went onto my first Physiotherapy session. The Physio was lovely, and really listened to my issues and goals. She sorted out some things I can do to improve my back pain and ward off so many muscle spasms. Then she said I was strong and had a great sense of body awareness – so my aim to get pilates and yoga back into my routine regularly is definitely doable, which is great.

Then we moved onto Occupational Therapy and we worked out some areas we could improve; longevity of shopping trips, my ability to do more chores around the house and work on my hands and grip.

Then came Psychology, which was weird. I got upset because of the vulnerability I felt talking to a complete stranger and it was an odd sensation. I thought it would be more to do with how I feel about living with a chronic illness, but it was more to do with being bullied as a teenager and how I see myself now. Which is great, but not what I’d expected to be delving into (especially with such a limited time frame… I’m a complicated woman and 3 sessions of psychology ain’t gonna do much!).

After lunch (which is cleverly made so that none of it can be squirreled away to our rooms for later – it was all salad, ham, chips and pasta) we had a session about the physiology of pain. I found this particularly boring, mostly because having been diagnosed with EDS for over 10 years, I know enough about pain to not need a lesson about it. I’ve read up about pain plenty of times and it just felt like they were teaching a granny to suck eggs, in a way.

I think that’s what Andy (the lead Psychologist on the programme) meant about my being a breath of fresh air in terms of being a chronic illness ‘sufferer’ – I don’t ‘suffer’ with anything; I have a chronic illness, I am not my chronic illness. So the sessions here seem to be catered to the more ‘Fibro minded’ people who tend to let their pain take over and therefore need to be taught how to change their relationship with pain. I am confident in myself and my illness to not feel like I have an unhealthy relationship with my chronic illness or pain.

Unfortunately this afternoon the jacuzzi wasn’t working so we were left with either swimming in the COLD (we have connective tissue disorders damnit, we need warm water!!!) pool or using the sauna – neither of which we felt like doing so we sat and relaxed for a bit before the children piled in the pool.

Anyway, I’m utterly knackered so I’m going to leave it there. My fella’s coming to visit me in the hotel tonight, so we’re eating dinner in the restaurant here. I can’t wait to see him, I feel like I’m a million miles away from him! (In essence he’s more like 40 miles away!)

Stanmore Pain Management Rehabilitation Programme: Day 1

I don’t know if I’ll be writing a blog for every day of the 15 day programme, (split over 3 weeks) but here’s the first day…

I arrived promptly at the hotel for the hotel-based pain management rehabilitation programme run by the lovely team at Stanmore (Royal National Orthopaedic Hospital) at 9am and was checked in swiftly. I made my way (miiiiiiles away from reception) to the back of the hotel on the ground floor where the ‘accessible’ rooms are kept. I am just outside the conference rooms, gym and swimming pool, so I’m dead chuffed about that.

Unfortunately I’m not very good at eating in crowds of people, so I am having my breakfast and dinner in my room and then joining the group for lunch every day so I can keep my social anxiety at a manageable level. I’ve suffered with ‘buffet phobia’ since my late teens; I’m sure I’m not alone in that.

The day started with an introduction to the Psychology sessions, which seemed pretty basic. A physiotherapist took us through an introduction to Pacing; a technique I’m not very good at, but hope to improve!

After the pacing talk and lunch, we split up and did our own thing. I had my first physio/occupational therapy session which was just going through the forms I’d filled in during the assessment process.

My programme finished at around 3 today, so I’ve spent the rest of the day in my room, watching Sex and the City and Game of Thrones. I have another short day tomorrow (starting at 9am, yuck!!!) so I think I’ll go and investigate the spa; the swimming pool, sauna, hot tub etc in the late afternoon.

One thing I would suggest is if anyone is being brought here by family or friends (and so don’t have any transport) they bring some drinks and snacks with them for their room. There’s a lot of down time and if like most of the group, you struggle with mobility, you’ll struggle to find a shop within walking distance of the hotel, so you’re really at the mercy of the room service charges. I’ll definitely be bringing healthy drinks and snacks with me for the 2nd week!!

 

Back in the saddle

It’s been weeks since my last post and I feel like I’ve been really neglectful of this place recently! It’s time to change that. I WILL start writing regularly again, I promise.

Anyway, a lot has happened since I wrote last – I was accepted onto the residential Pain Management Course at Stanmore for three weeks, starting later this month. I’m hugely relieved to have been accepted but now I’m absolutely bricking it too! I’ll be blogging about my time at Stanmore because I know when I was applying for it, I could’ve done with as many people’s experiences as possible, so hopefully this will shed some light for others yet to attend the course (or who are applying!). Watch this space.

I’ve written before about my love of travel and I’ve just returned from a 6 day European City trip – my partner and I visited Paris, Prague and Budapest and spent 2 days in each city. I’m still feeling shattered since coming home nearly a week ago, so I shan’t be going off on any more jaunts for a while. I’ll write a separate post about our European adventure another day when my hands aren’t seizing up; I got some great photos to show you all.

If you’re into vintage fashion, have a look at Vintage Life Magazine this month – you’ll see a rather large picture of my face!

 

Feeling tired, so I shall bid you adieu for now!