Post Easter Vibe

Well as usual when there is any disruption to my routine I am really thrown. Like I have said before and in the blog post Upheaval I don’t do well with change. Easter always throws me out as do any bank holidays, it can leave me unsure of what the day is for a week or so. I know it’s not just me everyone is thrown when there routine is altered. So for this week I thought I would just update you all on the sewing and embroidery projects I have been working on recently.

I have been making a lot of cushions. I like making cushions as it combines using my embroidery machine, sewing machine and overlocker. I have also been using my embroidery machine to embroider motifs onto sweatshirts. However my latest make only used my sewing machine and it was nice to get back to basics. I made some bunting, 10 metres of the stuff to go in the garden once the revamp is finished. (currently being held up waiting for various different parts to arrive)

The bunting has been made out of various scraps of material I have had lying around for a while and some fat quarters that I didn’t know what to do with. I can’t wait to have it hung in the garden this summer. It’s the first time I have made bunting and I am very pleased with it. I don’t know why I haven’t made it before.

I really love using my embroidery machine, it gives me another way to express my creativity and also make items that are personal to the gift recipient. I am in a cushion making phase at the moment, which I really enjoy because it uses so many skills. Here are just some of the ones I have made in the last few months.

I love the ones with the Deer on they are my favourite. I also really love the Llama one and the Lion head. Embroidery always cheers me up when I am feeling low, it’s been really hard since Molly and Frankie passed away, even though I have Dembe it’s not the same. I wouldn’t be without him and he is enormous fun but it is a massive change to my routine with him being a puppy.

I have also really enjoyed learning how to embroider sweatshirts. I buy plain £10  unisex sweatshirts and then embroider a nice design on them. It has been a case of trial and error getting the stabilisation right on these. I am much happier with the last three I have done, although I still wear the other two that I did before Christmas.

What is even better with this design was that it was free one month. I am also starting to now get adventurous and changing up the colours from those that my embroidery machine says to do it in. It is important when you do that to write down what colour you are using instead of the one listed on the screen or you can get yourself into a bit of a pickle.

 

I wear this sweatshirt a lot as it is totally me. Whenever I am stressed or anxious I try to sew as it keeps me focused on the task at hand rather than worrying about something I have no control over.

 This is a terrible photo but this is my favourite design that I have embroidered onto a sweatshirt I call it Chinese Chrysanthemums. I bought this sweatshirt especially to embroider this design onto it as I felt it was so dramatic it needed the black background to really pop.

What I love about embroidering clothing is that by changing the colours, placement etc you end up with a totally unique piece of clothing. I am going to try some more embroidering onto t-shirts for the summer. I will use a few of my old t-shirts to practice on to ensure I have the level of stabilisation right so there is no puckering or distortion of the design.

I think I love my embroidery machine ( like I love my sewing machine ) because I have to use the old grey matter and solve problems. It was nice making the bunting recently as it was going back to basics and just doing something that wasn’t too taxing but still needed thought about. 

I also made a peg bag recently, which has made me chuckle as it is like I am doing my sewing journey in reverse. Last year I was making quilts and bags, designing my own patterns etc this year I have made some bunting and now a peg bag. Both though are good basics to master. The peg bag I made my own hanger from wire as I didn’t have a small enough hanger and then made my own pattern. I used remnants from another project to make the bag. Now I can’t wait for my washing line to be back up ( once the garden is sorted ) so that I can see my peg bag in use.

I like using my sewing skills not just to make decorative items and gifts but to also solve problems. So recently I have made us a beautiful front net ( type ) curtain from a Broiderie Anglaise panel I was given. It is brilliant as it stops the light glaring onto the TV during the day but doesn’t impact the light levels in the house. It also provides us with some much-needed privacy. It looks really nice from outside the house as well. The problem with our lounge window is that it is south-facing so we end up with the light streaming in which is lovely but can also mean you end up all summer long having the curtains closed whenever you want to watch the TV. With the panel being denser than net it gives us privacy which we both value (I know that may sound odd from someone who writes a blog). It’s also had the added bonus of stopping Dembe looking at the window and barking at everyone who walks past! 

Off Topic

I know some of you are going to think I have well and truly lost my marbles so please feel free to skip this post if you hold no truck with the supernatural / ghosts / spirits what have you. I have to write about it due to what has just happened and I can’t ignore it any longer.

Ok so regular followers of my blog will know that we lost Frankie and Mollie within 7 days of each other ( 29th Dec 2018 and then 5th Jan 2019). Jay and I are not religious, although he was brought up in the Catholic faith, I guess he is atheist or agnostic. I have never asked him. I was brought up without faith and am atheist. However I do believe that we don’t just cease to exist when we die. Which I know for some atheists will be difficult to get their head around. The thing is I have seen too much, heard too much and had premonitions of events that I couldn’t possibly known about months or sometimes days before they have happened. That I just know that there is more to this world than what many of us see and hear.

For example for the month before my A-level results came out every night without fail I would dream about the letter C. Like on Sesame street this letter C would be huge and there would be 3 of them. It was bizarre and whilst dreaming I would try to change it to 3 B’s as I knew this dream was telling me what my A- level results would be. Low and behold exam result day I get 3 C’s. Pure laziness on my part, preferred earning money and going out to actual studying!

Before my driving test I repeatedly dreamt that I would be in a part of Plymouth called Little America and I would be asked to perform a reverse around the corner. As I was undertaking this the driving examiner would tell me to stop as he had under estimated how close the white car behind us was. Low and behold on my test – I am driving through Little America and I am asked to do the reverse around the corner. As I am doing it, just as had happened in my dream the driving examiner called a halt to it as a white car was too close.

I could go on and on and that would either serve to bore you rigid or for you to believe I am totally bat shit crazy. My premonitions come and go, I can go years without them happening. The last time it happened that I can remember was when Jay had his car crash in 2011. For around 3 months before I had the same dream over and over that Jay would be in a car crash and that our car would be written off. As I had dreamt it Jay did indeed have a crash ( caused by a drunk driver in a stolen car) and our car was written off.

So that’s the premonition side of things, I also see things. Not hallucinations but spirits / ghosts etc. I wrote extensively about the flat Jay and I used to live at in my post entitled “Haunted” (link here ). I can have feelings about places / people also. I also can hear things not as in voices but as in I can hear things like a dog jumping off the bed upstairs when Dembe is downstairs with me and the only dog that used to jump off Jay’s bed was Mollie. I have also heard a dog shaking his head and the collar jangling with the ID tag but Dembe is fast asleep next to me. 

The first dog I saw that had passed was our first Weimaraner Travis. The second litter of puppies had been born in 2007 and I had come in from work and was upstairs checking on them. I heard a dog behind me, I turned to look and assumed it was Mollie. I still remember what I said ” are you going to take care of these puppies or will I have to do it?” As I said those words I had turned my head back to the whelping box, when Mollie didn’t walk past me I just assumed she had gone back down stairs. I went down stairs and walked into the kitchen to find Jay in there with all 3 dogs. I was confused so asked him ” have these three been down here the whole time?” to which he replied “Yes”. I nearly fainted with shock, I knew that I had just seen Travis, a full body apparition of a dog that had passed away over a year ago. 

I am not the only person to have seen Travis. A delivery driver and his mate was bringing in some furniture and told me one of the dogs had escaped from the kitchen. I said no they are all in the kitchen. The guy went white and said I just saw a dog on the stairs . Travis used to sit on the bottom widest step and we had nicknamed it the sulky step as he would sit on it when we went to work. 

My mum has stepped over a dog in the middle of the night on the way to the bathroom when she was staying with us and then realised all three dogs were in my room. There had been no dog in the hallway.

My cleaner ( years ago when I could afford one!) said she had felt a dog brush past her on the stairs as she was vacuuming them. When she looked into the lounge ( our stairs are in the lounge and have an open banister) she saw three dogs sprawled over two sofas all fast asleep. No dog had gone past her, well no earthly dog. 

So strange goings on in my house have happened for years. When family members or close friends pass I have problems with the electrics, things turning themselves on and off without us touching them. Since one friend passed last year my hallway light at the top of the stairs flashes on and off. It’s just flashed whilst I am proof reading this. Initially Jay never noticed so I thought I must be imagining things. Then one day the light went off completely for several seconds and then came back on again. It can go days even weeks without the light flashing and then all of a sudden it is doing it every time the light is on. I acknowledge my friend in my head but I have to tell you out of all the stuff that has happened here, that’s the only thing that can scare me. Especially if I am in the house alone.

 That brings me nicely up to what happened today and surprised me so much I said “Oh my god” out loud and Jay said “did you hear that?” I was sat on the sofa that is opposite our stairs. Our stairs has three mirrors going up the side of them so I can see in the mirror opposite me the top of the stairs. What had caught my attention was the sound of two steps at the top of the stairs. I looked in the mirror as I always would have done when the Weims were alive only to see the back-end of a Weimaraner disappear into my room. I then said “oh my god” because I was taken a back not frightened. Jay had heard the steps but due to where he was sitting he couldn’t see the mirror. When I told him what I had seen he wasn’t surprised as we have both seen and heard our babies since they passed. It provides us with a level of comfort knowing that they are still with us, even if it’s in spirit only. 

Dembe has also seen them, I say this not because I pretend to know what he is thinking but because of his reactions. He has play bowed ( stuck his arse in the air and bent with his front legs on the floor) and rolled his ball to nothing. I was sat across the other side of the room and watched him do this, not just on the one occasion but on many occasions. He has taken toys over to what we have nicknamed for years the sulky step because that is where Travis and Frankie would sit sometimes. 

Jay has heard Mollie, Frankie, Willow and Travis accompanying him on his walks up the common when it has just been him and Dembe and not another soul in sight. Some days it is a comfort other days it just reminds you of how very much we have lost. Of course we wouldn’t be without Dembe but at the moment it still feels like we are all still getting to know each other. With Mollie, Frankie and Willow we had been with each other for years and we know all their little idiosyncrasies. So although the house doesn’t feel as empty as it did in those six days after Mollie passed whilst we were waiting to get Dembe, it still feels pretty empty compared to how it used to be.

I think that’s why what happened this afternoon really sort of shocked me. I wasn’t expecting it. It was nice to know that they are still around and they don’t feel pushed out with Dembe around. 

Upheaval

Currently our back garden is in a state of upheaval, I know that the end is in sight (fingers crossed it will be completed or at least almost completed over the Easter weekend) . We knew it would need to be done this year but had hoped that it would wait until the summer. At the time we had discussed the plans we still had the two Weimaraners and not a puppy who was hell-bent on discovering every piece of rotten decking and turning it into a huge hole, or carrying bits of rotten wood into the house.

I will be honest I don’t cope well with change, I don’t like not knowing when things will be completed. I must have a plan or my anxiety goes through the roof. I often wonder if my inability to cope with change, tell a story just going from A to B, rather than all around the houses, my problems with textures of foods, materials, clothing, dirt on my hands is a massive signal that I have some sort of sensory processing issue or the fact that I am on the Autistic Spectrum.

 I have noticed at my physiotherapy sessions that I take my therapists instructions literally, I have to look at her to see what she is asking me to do as invariably I will do the literal interpretation not what she has asked me to do. I wonder also if my need to control everything is also born from the possibility of being on the spectrum. I like order and control. I like a routine, changes in routine cause anxiety.

The other “issue” I have although I don’t see it as an issue it is just mildly irritating is that I will get fixated over words and repeat them endlessly in my head. A few years ago for months I was fixated on the phrase / word Beth Din after listening to a programme on radio 4 about Jewish courts ( a Beth Din) and getting a divorce ( a Get ). The word Get also became part of this never-ending repetition of words in my head. I now sometimes panic if I hear the phrase Beth Din worried that it will start-up the never-ending loop of this word bouncing around in my head. Sometimes I will also say the word out loud but it is always when I am by myself. That’s not deliberate it just tends to be when I am by myself the word loop can intensify if I am not distracted. 

I know some people might say that this sounds more like OCD but there is no dread or sense that bad things will happen if I don’t say them or have them on a loop in my head. It is just something that happens and I can go months without having a word doing a loop, today’s word seems to be parallelogram. The words can be because of the way they sound or the way my mouth moves when saying them. I know it’s a bit bizarre and I may regret being so honest about sharing! 

So as I said earlier I can’t get to a point without going around the houses and there was a diversion definitely in the paragraph above. So the garden looked ok to those that didn’t realise that a lot of the plant pots were covering holes in the decking. It was getting to the point where we just didn’t have enough pots to cover them as Dembe was always busy making more.

We are doing the work ourselves helped by friends who have offered up their time and expertise. 

On the Sunday Jay started he pulled all this up really easily as it was all completely rotten. The balustrade was also completely rotten through. Jay made a start before our friend Leanne came over to give him a hand. due to my medical conditions I am not physically able to help and it really upsets me that all I can do is plan and order the things we need. Whilst everyone else does the physical labour. Before I was sick I would have loved to have got involved ( wearing gloves of course!).

In 4 hours Jay and Leanne removed loads of the rotten decking but were stuck when it came to the joists. In some places the joists were rotten so it was easy to saw through them and remove them. However quite a few parts were not rotten and sawing them by hand was taking forever.

Jay asked one of his colleagues from work if their husband had a chain saw and within an hour they were here making light work of the joists that had caused so many problems.

Of course to complicate matters we live in a mid terrace, with no rear access. So everything that is removed from the garden has to come through the house. On the following Tuesday Jay removed all the decking and joists that had been piled up in the back garden and brought them through the house. Cue lots of mud and bits of wood. It then took him a couple of hours to saw the large pieces into bits small enough to get into our car. Thankfully it was only two car loads to get it up the tip.

The following Sunday, Mark who had helped us with the chain saw the previous Sunday came over and helped Jay remove the remainder of the decking and the joists. This time they took everything out through the house the same day so that Jay didn’t have to do it by himself on his day off. This last bit only took around two hours.

The next phase of the garden will be completed (fingers crossed) over the Easter weekend. Due to the soil being heavy clay and water-logged we need to install a drainage system called a French drain to remove the surface water or the gravel that will be going down to replace the decking will just turn into a bog. 

The garden did dry out a bit when we had a few days of sun and wind but as soon as it rains it turns back into the mess you see above.

I had to order 25 metres of land drain which is the black coil of pipe in this photo. Rather unrealistically I believed that it would come in a box – obviously my spacial awareness is lacking. It doesn’t look to big here but it is enormous and had to be rolled through the lounge and then the kitchen to the patio. The small amount of patio that Dembe has had to do his business on has got smaller and smaller as more items are delivered.

We have fence posts, fence panels, garden gate and 3x 800kg of gravel. For someone who likes order and routine it is a lot to deal with on a daily basis.

All the fence posts, panels and garden gate also need painted so we are waiting for three days of dry weather so that we can slap a coat of Sea Grass on them ( same as the fence in the photo above).

I know it will be fantastic when its been completed and that Dembe will have a lovely space to run around in, where he can’t slip and hurt himself or chew through rotten decking boards. And although it is being done earlier than we had planned at least we will have the summer to enjoy it. If its anything like it was last year Dembe will be getting a paddling pool to enjoy as he loves water!

So if everyone could keep their fingers crossed for a relatively dry Easter it would be appreciated.

Dangerous Medicine

We all know that all medications and that  medical procedures come with a certain amount of risk – the biggest  being death. However in this day and age you would think it would be virtually impossible for a patient to die of neglect. I know mistakes can happen, they shouldn’t but they do. Someone I knew of, was acquainted with has died this week due to being falsely diagnosed with FI – Fabricated Illness. You can read about Shawn here  (and yes the newspaper has managed to spell his name incorrectly.) 

We were ( the CSF Leak group ) so happy when he made his way to Germany where he believed he would finally get the medical treatment he deserved and which the NHS had denied him for so long labelling him as having a mental health issue and fabricating his symptoms to get attention. Because Shawn dared to question the expertise of those he sought help from and because his condition was outside the scope of their knowledge, that label was applied and prevented all other medics within the NHS to seemingly be able to view his case with fresh eyes and objectivity. They all seemed to just cop-out and follow the notes of his previous doctors. If enough doctors write on your notes that you have fabricated your illness, it basically means all help is withdrawn and Shawn had to die to prove to them how sick he was. When all he wanted to do was live. 

I am so angry and just so fed up with the medical profession’s arrogance and their inability to admit when they just don’t know. Too many people are being labelled as having a mental illness and when they eventually do get the correct diagnosis – the doctors are reluctant to remove the mental health diagnosis. I’ve had it happen myself, I ended up in hospital as my stomach had swollen ( I looked like I was pregnant with twins) and had reduced bowel sounds, I’ve had an intusscesception before as a child and I have had complications from bowel adhesion’s resulting in an open surgery to remove them. (info on intusscusception ) . As I was being examined a student doctor asked me how long I had been on seroxat ( an antidepressant) the year was 2010 and I had last taken seroxat in 1999. The suggestion being that the student doctor was already looking for a mental health diagnosis for my swollen stomach and reduced bowel sounds.  She seemed surprised when I suggested she had a look at my more up to date medical notes and that I hadn’t been on seroxat since 1999. She was forming an opinion on notes from 10 years ago. It must make life so easy if you can blame the patient for being sick.

On another occasion I was in accident and emergency due to the indwelling catheter that I was having to use blocking. My bladder and bowel had ceased working the day before so the district nurse had been called in and a catheter inserted to relieve the pressure on my bladder and allow the contents of my bladder to be emptied. Having had a glance at my notes before treating me the doctor asked me how long I had been suffering with somatiform disorder. An unusual question to be asked when a catheter is being removed from your urethra. Again the diagnosis was 5 years out of date but had failed to be removed. A tilt table test ( well two) had proved I had PoTs and Orthostatic intolerance and a private rhuematologist had confirmed my diagnosis of Ehlers Danlos Syndrome. My Beighton scale was off the charts as I was bendy in joints that were not included on the scale, along with my slow healing, wide paper-thin scars, stretch marks as a child etc etc.

It doesn’t seem to matter if you have a “proper” diagnosis ( not dissing mental health here I suffer with depression and anxiety) if you have a whiff of a mental health diagnosis in your medical records all problems from then on will be attributed to your mental health issues. Just take the trapped nerve in my neck and the numbness in my arm last summer being put down to stress. It was only when I was losing my ability to grip with my hand and had a proper examination was I informed that I had an impinged nerve and if Physiotherapy didn’t help me I would be looking at spinal surgery.

I know so many people who are struggling with depression and anxiety who refuse to reveal this to their doctors and get help because they know once the diagnosis is on their records ( and especially if they female ). Many of them in the PoTs group I am (one of) the admin for I reckon 99% of the 4k membership were told that they were suffering from anxiety when they first went to their gp about their palpitations / near syncope. It’s a nice diagnosis for busy gp’s who only have 10 minutes per patient. The problem is so many people with chronic conditions are hiding depression and anxiety because they know they will no longer be taken seriously that we are now sitting on a ticking time bomb and there will just not be the resources to deal with it when it finally goes off.

Medicine is getting dangerous, it is ignoring those that don’t fit the text-book definition of the condition they have been diagnosed with and doctors are handing out mental health diagnosis without a patient being assessed properly by a psychologist or even a psychiatrist. I was diagnosed with somatiform disorder by a neurologist. It’s like having a podiatrist conduct your open heart surgery. It’s not a situation that would be allowed but many doctors who have no formal training in psychiatry or psychology are diagnosing conditions that will have detrimental ramifications on their patients treatment forever. 

You can complain, you can ask for a letter to be put in your notes, explaining that you don’t have conversion disorder, Munchausen by proxy, Fabricated Illness Syndrome, Somatiform disorder but doctors can and do choose to ignore it. Keep shouting loud enough that you don’t have the condition and it just acts as more proof that you are mentally unstable. Cry in a medical appointment discussing these falsehoods contained within your medical notes and you will be diagnosed with depression. You can’t win, the doctors hold all the cards and something has to change because too many people are dying due to neglect. When I mean neglect I mean wilfully denying treatment due to arrogance or ignorance. It makes me sick to my stomach and I am so very fucking fed up with it.

The other one they like to use against you is medical knowledge, even if you come from a medical background like nursing and would know about the condition or symptoms you are talking about. I don’t have a medical background so have had to research things because I can not trust the doctors to do it. The last time I trusted a doctor I ended up almost needing spinal surgery, as they told me my neck pain and numb arm was stress.

 Know too much about the condition and you are spending too much time on the internet looking up syndromes to have – real words spoken to me by an NHS consultant when I told him I was feeling the sickest I had ever felt. A few weeks later I was diagnosed with Meniere’s disease and a few weeks after that I found that my prolactin was raised and it was possible that I had a pituitary tumour ( thankfully I didn’t but we never found out why I was lactating or why the prolactin had been raised).

I have used the countless examples of where mental health diagnosis has been used as a cop-out by doctors to excuse their laziness / unwillingness to pursue the answer / outside their skill set on me to illustrate the point of how easy it is to suddenly find yourself fighting to be heard when you know you are sick. It is not in any way to take away from Shawn’s tragic story.

I am so angry because I have lost friends and relatives from medical cock ups. My dear friend who passed away last year was incorrectly diagnosed with COPD, only to be dead from lung cancer 7 months later. How they missed the tumours in her lungs and the one at the base of her spine I will never know. It wasn’t like she hadn’t had all the appropriate scans. The same mistakes keep being made and no one is learning the lessons the health authorities keep saying that they are.

I will defend the NHS and its principles with my dying breath but I can’t defend shoddy workmanship. The rotten apples need to be removed. The lessons do need to be learned because Sorry is no good when the patient has died.

 I feel quite strongly that we are living in a time of very dangerous medicine, where the cheapest disease is the one diagnosed, where tests are denied when there is already a mental health diagnosis present of which the patient is either aware of unaware of. The system is broken when patients can no longer trust their doctors to first do no harm.

For more information on how easily you can have an erroneous diagnosis applied to you please check out the links

It also usual plays straight into their hands if you are female.

Functional neurological disorder / conversion disorder

Medically unexplained symptoms

Conversion disorder / Somatisation disorder

Management of MUS

Factitcious Disorder

munchausens-syndrome