Restless Leg Syndrome

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Image is from channel five website

Not sure if I’ve spoken about this or not, I suffer with restless leg syndrome just one of the things on my list of diagnoses. There was documentary about this last week, which I just knew I had to watch as I am sufferer of this, it’s nice to see things on TV that I can relate too. Although it gave good insight into it, once again I found myself detached as someone who has chronic illnesses, one lady walks her dog for three hours and gardens I  can’t physically do that, to be honest majority what they were doing I can’t do, but the lack of the sleep, legs feet constantly moving yep I could relate too. I come with pre warning now when you share a bed with me, that I kick, I’ve hurt my mum, my partner, I get these episodes where they just move on their own accord, nothing I can do to stop it. Sadly in the process I’ve truly hurt loved ones, and seeing the next day you hurt someone isn’t good. Thankfully I have bigger bed, so more room, if I stay somewhere else if option is there to have my own bed, I’ll take it. For me when my restless leg syndrome is bad, I have to sleep with pillow in between my legs, to stop me from flipping around so much. There’s something about having this almost seems like a joke to people, one case in point, occupational therapist came to my home, this was years ago, asked what I had, so told him all of it, asked me what’s restless leg syndrome, I told him, he was like you doing work out while you sleep, must be great way to keep fit, no word of lie, then preceded to laugh, yep….. Very professional, I looked at him, with a not so funny face, confused, offended, and taken back, speechless. Yes because having a condition is laughing matter. It took years for me to be diagnosed, it took me going to sleep clinic to finally see why on earth was having sleep attacks, literally fall asleep standing up, walking, talking eating, I was that drained, my body needed time to rest. Put on medication for it, which thankfully calmed it down, then sadly got insomniac due to the side effects amongst other side effects, then changed again, which has given me more of balance, sadly with years of rubbish sleep pattern due to crappy loud neighbours, then again at the other flat, it’s hard, which didn’t help with my sleep, now it’s different, trying to break the pattern, now that I’m in different environment.

Speaking of restless leg, prime example last night, my body felt restless, my legs feet was doing that thing where you moving, stretching, screaming to me like this body needs to rest, but I couldn’t control the movement, it was like a battle, and that’s how restless leg is, but that’s how I feel on a daily with all the conditions. The problem is, it’s more common than you know, this condition, that’s why it’s worth a watch if you are in the UK, it’s on My5 (channel five website). With restless leg syndrome you can do serious damage to yourself, case in point, the guy in the pic has broken his bones due to it, another guy went to desperate measures just to control it, without giving the whole show away, thankfully for me it’s just cuts, bruises I get, oh and extra aches for my fibromyalgia, it’s like having fights and losing, my best description for it, can’t say woken up thinking that was good workout in the early am’s. The best leg workout, sign up now. Must bare in mind it’s different for everyone, treatment and all.

I’m not being paid or asked to promote this documentary, I just think it’s good to educate yourself, learn about it more, might know someone who has it, or you have it, I would say already know one has it, me!

I am fully aware not told you, exactly what restless leg syndrome is, I hope you use search section to look it up, watch the programme, so that way you learn about it, if gave it all away, might not want to go check it out for yourself. And by no means if you want to ask me something, more than happy to answer in the comment section.

Hope you have lovely week xx

Anxiety On The Rise

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Dogs hairs and all on my tracksuit in the pic, with Holly gracing her presence, don’t you just love her floppy ears. Something that niggles at me, is how much anxiety gets exposure, but not always the full picture. How anxiety came form when someone is housebound, had a form of trauma, stressful jobs, peer pressure, family pressure, the list goes on..

For me, being disabled, chronically ill, having mental health there are so many levels you deal with. And for me it’s like when someone complains they have a cold/flu, you body is drained, mood is low for a week, and get back into action feel good again, well for me and so many others, we have no idea what pain free day is like anymore, we have to become accommodated to the pain, when theres flare ups/other health problems on top, our moods go into, what more stuff on top. Social media can be great having an outreach, but can also be a bitch, make you feel like missing out things. And by no means am I in the pity party oh worries me, as I’m typing this, I’m thankful I can type today without my hands clamming up, seizing. I want to bring awareness of anxiety from different point of view, by no means am I belittling someone who has it, doesn’t have chronic illness, as it’s still anxiety at the end of the day. But be aware of other reasons why someone has anxiety, just like a lot who suffers, going new places, heavily busy areas, meeting new people, for me it’s having new carers, not wanting a non epileptic seizure to happen in public, not over doing it, causing more pain upon myself, is there access to disabled toilet when I’m out, my journeys planned, etc etc. My anxiety started when I became seriously ill, housebound, months at time not leaving my home because I was bedridden, my whole life changed, from having social life, going to uni, living active life, to not been able to feed myself, go toilet on my own, had to be clothed and washed, so yes the outside world became distant memory, felt separated, as time went on, gained bit more strength but the damage had already been done, then throw in the non epileptic seizures in, nightmares with that, yes anxiety strikes up. I’m human. You think life is stressful enough right, bills, boring adult stuff, then you add in PAIN, it’s different for everybody. I just want anxiety to be the whole picture, not the fashion trend that every blogger has it, Youtubers that diagnoses themselves, I truly dislike that, always go to the doctors, don’t tell your wide audience about anxiety when you not even been diagnosed, however there are Youtubers out there, speak their truths, talk about being on meds for it and bloggers too. I do want to touch onto subjects on my blog, about mental and physical health more, as for some reason feel like under dog, need to represent for those who can’t speak, or might not want to blog or do videos, that I can voice just that tiny piece, of what we go through. Don’t worry anyone that speaks to me, I would never air your business, only blog about it if you wanted me too.

So you must be wondering why this pic for this topic, well I’m always abstract, it’s reminder to those anxiety can come in any shape or form, anxiety can even make people wheelchair bound, as consultants have told me, they have seen patients in wheelchair because of it, they do ask me am I, mine are for different reasons, nonetheless it’s about educating. If you think you might have anxiety, please visit a doctor, don’t be ashamed, get the right help, you need and deserve.

If you have any questions, or you want to share your own experience with me, just leave it in the comment section, or email me if you want it private. My email details are in my About Me section on my blog.

Right, I’m finally going to push the publish button, and yes get anxious about posting, will anybody see this post, putting myself out there, am I doing the right thing, so before I change my mind, here it is, ANXIETY, post!!!

The Dreaded Brown Envelope

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The dreaded brown envelope, every person who deals with Disability Living Allowance, PIP, Employment Support Allowance you know it comes through your door, it’s the instant feeling of anxiety, for my UK people. We go through every ray of emotion. I should explain if you not familiar with this, it’s basically benefits for people who are disabled, mentally ill, learning disabilities, the forgotten ones, invisible ones, as that’s how it feels when you constantly battling with the system. Do you know how hard it is, just to claim, the forms, the telephone interviews, the face to face medical assessment (consultation), how many loops you need to go through, how stressful, how ill it makes you, many sleepless nights, just so you can live day to day like everyone else, it’s not pity party we ask for, just acknowledgement of our illnesses. Since the change over to PIP (personal independent payment), so many people have fallen, so many without, due to all the cuts, so many appeals, thankfully for me I was awarded, less money as before when it was DLA sadly, but I know it could be worse, could be zero. However so many errors was made, false information about me, lack of facts, all I asked of them was to have the correct information printed about me, so many mistakes and that’s what angers me, was given letters not even in order, some pages repeated twice, just chucked together, posted out, even after sending letter about the errors was sent letter of oh you didn’t state where you wanted us to look, let me tell you, had everything dated, page number, page section, detailed, got help so knew what I sent wasn’t a mess, but it’s like talking to brick wall, nobody is listening there, like I said earlier stay grateful for what I get, wasted enough of my own money trying to get them to change my information, stating facts, bow out gracefully, as Lord knows have other battles to face.

Advice for those, please make sure you scan in everything of your form, or take pics of every page, the letters you send, have copies. Make sure your medical reports are up to date, if you have any support have evidence of it, if you need to appeal, make sure you have things recorded delivery to them, so doesn’t get lost in the post, plus you have proof you have sent it.

I know this isn’t your average blog post, it’s not holiday post, pretty pics, product reviews. But sadly right now this is reality for A LOT OF PEOPLE, and sometimes I like to address real life issues. And it’s something I wanted to express. Those who facing the assessments, good luck, and those who’s just had it, like myself, we made it through, I found mine so stressful had so many non epileptic seizures almost ended up in hospital, that’s how much torture you put us through, government…..

To those passed away due to mass of stress, R.I.P ❤

We are not invisible, we are not disposable, we are human beings, send hugs to my fellow people who can relate, and to those who are not, just take a minute to soak this in, don’t be afraid to ask from either parties.

Do me favour, if you on social media don’t forget to follow @loopysos Thanks x

Disabled.. And Robbed…

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Yes you read the title correctly, so not long ago was in the process in moving, you might be thinking yes you moved couple months ago if you follow my blog, well I’ve moved again, yes the shortest tenancy record, well due to the property being deemed as unsafe amongst other problems which won’t go into detail, needed to move.

Once again on the move again, still not recovering from the the previous move, it was time, and boy was I happy to leave, and this incident sealed the deal for me. So what happened you asking? On the day of the actual move, removal company was hired, not by me, need to state that, as this removal company that’s meant to help disabled people supposedly, trusted company, nope, they was SHIT, half ass job they done. So they leave now to go to the new property, leaving this very suitcase pictured above at the front door to the flats, propping it open, so they could come in and out without needing to buzz them in every time, not only was left there to prop the door, they left their trolley behind, that helps move big items, get phone call could you please check if we’ve left it behind if so, keep an eye on it, I go out now looking for the trolley, only to find my suitcase is there left behind, A. Why wasn’t it in the truck, B. Why was it left inside my actual flat. As I go to my suitcase, which is now not propping the door, but now in the presence of strangers man hands, the man is rummaging through my suitcase, looked at me, took something and ran, but it gets better, he stops midway looking back at me like haha you can’t catch me, you can’t run, as he see’s my crutch, and I looked weak, as super exhausted that day, it was wasn’t a kid, young man/woman, it was middled age, dressed nicely guy, olive skin with flat cap on, I felt POWERLESS, in that moment I felt very disabled. It’s moments like that scares me, not scared as in fearful of people, scared that I cannot protect myself, without going into detail faced a lot in my life, and one thing I am not is a victim I am survivor. Even though wasn’t attacked by the robber, it was the look of you can’t catch me was the killer blow, and once screamed shouted, I locked the door to that flat and thanked the Lord was going to somewhere better. Waved goodbye to the drug dealers that was dealing right at the corner of where I use too live, a neighbour that was evil, yes in that very short period I dealt with a lot, and that’s not all of it. It was never a home.

Oh you must be wondering what did he take, sadly due to bad memory, lack of sleep, exhaustion, being very achey couldn’t remember what I packed in that suitcase, so don’t know what he exactly took, I know it’s something that can be replaced, as my sentimental things was still in there. And this suitcase is actually from antique shop, has back story but go into that another day perhaps.

So if anyone is moving, make sure you go with removal company that has good reviews, highly recommended, you feel comfortable and confident with. Sadly I didn’t have that option this time round, as it was out of my hands, as the move before that, I researched, rang around, and would recommend them if you was local area to me, and best believe when they say moving is stressful, try doing it with chronic illnesses and doing it twice in under two months, madness. Don’t ask me how I did it, but with support got there, which I am grateful for.

PS Don’t forget to follow me on my social medias @loopysos

New Wheels.. Red Coat

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Wait, what, you girl has new wheels, yes!!!!

Through a lot of research, and looking through various websites, as let’s be honest theres not much advice out there for someone who doesn’t solely use a wheelchair, use crutch for short distances, and wheelchair for longer distances. It’s not like get advice from anywhere, I chosen to have wheelchair so can have better safe life, although I get questioned it all the time, so why the wheelchair, why the crutch, clearly because I need it, wouldn’t be using it as a prop, I don’t mind being asked what’s my illness but so often I get interviewed, assuming I’ve had accident, not that could possibly naturally have an illness, that’s even with doctors, trust me get it everywhere.

Onto the new wheelchair, and how did I find it. Like I said above searched a lot, this isn’t a plug, sponsorship, nothing given to me for free. However this website stood out for me, not only do they have live chat on their website Careco, you can call them up for advice, this was huge help, a blessing, being completely lost, confused on which wheelchair suited me, also keeping within a budget, they gave advice, spoke to them about my requirements, the environment I live in, as a lot of cracks in pavements, steep pavements, the problem with previous wheelchair I felt all the bumps, I had to have cushions just so felt it a little less. With this one guess what, don’t feel the bumps like I use too. On the first day in it, felt so sick, dizzy as been so long since been in one, being in the shops with my partner I was yeah, not great. But second time out felt ok, got better, wasn’t feeling sick. Now it’s fine.

I didn’t plan this red wheelchair and red coat, it is my favourite colour. This coat I got from Debenhams, my partner’s parents bought me this winter coat for Christmas. Had plans to do outfit posts, but life just been crazy.

Some of you may know I set up Gofundme page, to raise money for new wheelchair, and can I say without generosity, support this couldn’t of happened. Truly thankful.

Special thanks to:

Susan Davis

Ellie Granata

Jananne Salmon

Helen G

Lorraine Watson

Janine Haggis

Zebra Mustafa

Rose Elliott

Vivien Jean-Paul

To everyone who retweeted, shared my link etc, that never went unnoticed, you all know who you are, without fail, always had my back.

Even though didn’t reach my goal completely via gofundme gave me great platform, and for that I am grateful.

 

Insensitive Council Employer

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Last night I experienced insensitive council employer on the phone, my flat currently has leaks due to the flat upstairs and their dodgy bathroom & kitchen. As you know not long moved into this property, so why so many problems, but let’s concentrate on this call. I’m stressed, emotional, very achey as my health suffers. I explain to the person on the phone, repairs line, that my flat is hazard, leaking in dangerous spots, I am currently still living with leaks, so it’s raw right now. I told the person I am disabled so this is more of a problem, he replied it doesn’t say you are disabled on their records, I said not long moved in, only just seen the tenancy officer this week, so my records wouldn’t be updated yet. The advice after saying my flat unsafe, the leaks are not stopping, he told me go upstairs to the flat above me, and tell the neighbour situation and get his side of things, I said I CANNOT go upstairs to confront the man who lives above, he said why not, I said I am disabled. You think that be it, he come up with different solution, nope, he told me why don’t you try go up there, how many times do I need to say, I have chronic illnesses, at this point I was highly annoyed, how can I try, please tell, I walk with crutch and wheelchair user, I suffer with non epileptic seizures, my bathroom is disabled fitted, what more proof do you need. How dare you ask someone, who can’t, just try, take your time up, hell no….

After awhile, he said I ring upstairs to get the man come downstairs, why couldn’t he just do that, after already explaining my situation. Once again feeling invisible, but this time by phone, belittling my illness, actually so stressed, then that on top, won’t lie, before bed I cried my eyes out, I felt so small, like I don’t want to be ill, but I am, unfortunately I didn’t get the man’s name, to make formal complaint, how dare you. And yes I am going to air how I feel, as nobody should be made to feel this way.

Insensitive Council Employer!!!!

I’ve Moved

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So A LOT has happened since I’ve last blogged, after a very very long battle I am now in adapted home, no more dangerous steps when entering and leaving home, bigger space and overall better place. However the timing of the move was crazy, over the Christmas period, while people was enjoying the holidays, my life consisted of packing, phone calls, packing, more calls.. Christmas Day was spent surrounded by boxes. With very little time to move, the pressure was on, I lived at my previous home for 10 years longest place I’ve ever lived at, so yes over long period of time I have accumulated a lot of things, actual become hoarder, when I moved back to London on my own, age 16/17 years old I had one black bag to my name so from that, to flat with too much things for me, felt over whelming.

For me moving became a lifestyle almost, I thought yeah I got this, forgetting one thing I had in my favour in the past, the biggest thing MY HEALTH. I wasn’t ill back then, I never knew how physically draining this was going to be, just how much it would take out of me, to the point I was worried I was going to be hospitalised because of it. Moving is no joke, add being chronically ill into the mix, Christmas period so people are away, busy, off, etc, it was mission impossible task.

Now that I’m in the new spot, the work hasn’t stopped there. I have a lot of things still to go through, things that I’m giving away, going to charity, or in the bin, by the way it’s not like designer goods, collectable items just general things that been gifted to me over the years, or bought etc. And you will be on this journey with me, as create new space, use pieces I have as different furniture pieces, while bringing you along to my hospital appointments and the general life of Loopy (aka bit of everything).

New Year, new chapter, blog more.

PS- Still trying to raise money for new wheelchair, time isn’t on my side, as truly need it. Help if you can, truly be grateful. Click here for my Gofundme page. x