I have written this blog over several days/nights this week. Several long, tiring, emotional, painful days. I have to say, they have been the toughest so far. The mask has slipped – I cried in front of friends, in the middle of a restaurant one evening. I was mortified. Some of those girls hadn’t seen me cry since I’ve been ill. I’ve managed to keep strong and just try to magic away what’s going on and simply enjoy normality for a while whilst in their company. It didn’t matter to them of course, they were concerned about me but to me it mattered. It shattered that illusion that “I was fine.” But I adhered to my own advise and decided to leave and come home – I had taken on too much, hadn’t paced myself properly and hadn’t acknowledged that my symptoms were starting to worsen again.
A combination of things have led to this moment in time. From my tenant letting me down last-minute so therefore having to find someone new to move in and incur the costs that go with this process. Since I’ve been home I have gone through all my savings and relied on the support of my family. I am incredibly lucky and I am very aware of that. We talked several times about the fact I should see what I may be entitled to but I guess out of pride, I never wanted to. But then, I thought, why shouldn’t I be entitled to anything? I am working two hours a week, have no savings and am relying on my parents who are both entering retirement and that just isn’t right. I know I have worked outside of the UK for a few years but I have contributed a lot to the system whilst working and living here so surely that counts for something? At the very least I should be able to contribute to the food bill or heating – (that bill must be considerably higher with me being home – sorry ma and pa!) So I bit the bullet. First I rang the citizens’ advice bureau who were very helpful and gave me the appropriate phone numbers. I felt quite positive but that was soon to change!
I got through to a man who talked to me as if I was something he was scraping off his shoe. He was sarcastic and rude, presumptuous and self-righteous, unhelpful and unprofessional. I was honest about everything from working in Dubai, to telling him about my flat I am subletting. Yet I found myself having to defend my situation, explaining how I was a professional woman who had worked since the age of 15, been to university and qualified as a teacher. It is only now, after being ill for a year that I had contacted the benefits agency because I hadn’t wanted to abuse the system, however, things have become a little tougher, and I needed to find out what my options were. I had to defend the price of my flat which he scoffed at and asked how anyone would ever want to pay that price. He repeated several times, just to clarify, that I was single, 30 and unemployed! Yes, I am – and your problem is?! It was just an unbelievable phone conversation which actually really upset me. It made me feel like I was the scum of the Earth.
Following this phone conversation I have received roughly ten letters from various departments all stating different things – some requesting me to complete questionnaires, some stating I was unable to claim benefits due to renting my second (?) property and having savings in excess to the limit. There were many mistakes – I only have ONE property, I can’t afford to live in it so am living with my parents! I understand that my flat counts as savings and if I’m desperate I should sell it but that seems unjust somehow. I worked so hard to save and get onto the property ladder as a single woman and I don’t want to let it go. I then had a letter stating that the doctor’s certificate I sent was out of date and needed to send the next one (I hadn’t yet posted my doctor’s note!) I spent thirty minutes on hold to question this only to be told that when you register with them they count that as day one of seven days self certification and an automatic letter gets sent out saying that this “self certification is running out.” I told them that at no point in the letter was self certification mentioned and that the whole thing was badly written and very misleading!
I then received two text messages saying they had received my doctors note and that my payments would be out into the bank on my pay-day – result. Or not. It appears that when doctors certificates are sent in, that department assumes you’re in the system and sends an automated text informing you what has been received and that your payments will be continued. After another thirty minutes on hold this was explained to me and was told once more that actually, no, I’m still not eligible but that decision makers were still considering my case. Stupid, stupid, STUPID system!
I have since had more back and forth phone calls and letters because they did my flat valuation incorrectly – if their valuation was correct, I would be a very rich girl! It took Dad and I a while to decipher their workings and write a response. I was also informed over the phone when I was disputing this latest issue, that I needed to provide proof of my shared ownership because they’d assumed it meant I was sharing the ownership with an ex husband! Firstly, you made me clarify SEVERAL times how single I was and secondly, read the endless pieces of paper I filled in for you stating it was a housing association property!! ARGHHH! Now this was clarified (she didn’t like the fact that when she got her calculator out she realised Dad and I were correct so by this point she was being quite brusque with me) she informed me that I hadn’t sent in any proof from my mortgage lender or shared ownership company that they had agreed for me to sublet or that I was indeed sharing with them and not an ex….that is because nowhere, at any point was I asked to do so! But, this has now all been sent off and I am awaiting a response – what do we think all?? I feel this may, possibly, result in a big fat nothing!
And then there comes me. Me and my stupid body. It appears I am beyond most people’s help – no sarcastic comments here please! I became desperate last weekend. I have no idea if my symptoms have worsened because of a slight change in medications, whether the cold if affecting me or if I’m just simply getting worse. I now have a constant ringing in both ears and my noise sensitivity is through the roof. Lights are now even more painful and I am oh so glad that the darker nights have drawn in because there are more hours in the day where I don’t need my sunglasses on! The fatigue and muscle/joint pain is gradually getting more painful again but the worst thing is my head. I saw my GP two weeks ago where she informed me that in her opinion specialists most probably couldn’t be able to do anything and that the best thing I could do is ‘hope.’ Yup, you read that correctly, her prescription to me was hope.
Since Saturday the pins and needles have just gone insane, I now even have them on my eye lids making me want to reach in tear those bad boy eye balls out of their sockets. And on top of that it feels like my head is on fire. And I mean, white coal, pizza oven, scold yourself on a pan FIRE! Now, I have coped with the constant pins and needles for ten months now, I have learnt not to itch and scratch and have grown to accept that I flinch when the wind blows across my head, that my face physically hurts when a tear runs down it and that the pins and needles are accentuated when loved ones kiss me on the cheek. But come Monday, I was done. I slept for about three hours Sunday evening because of the pain. So I went to my GP. I can’t go into detail because it will make me cry. But long story short, she said there was nothing she could do. Nothing. That is why she has referred me to a neurologist. This is the same GP who back in February said I didn’t need to see a neurologist and that unless my face started to go numb, it was nothing to be concerned about….see face below….
So, I cried. I kept myself busy because if I was busy I wasn’t thinking about the pain and the itching but being busy is tiring and being tired is one thing but not sleeping and being tired is another. Fatigue on top of fatigue is not good. Being busy hurts and the pay back from being busy hurts even more. But, I smiled and kept going, had my reflexology Tuesday morning but you know what, it was too much. So, although I really didn’t want to because I know how much strain the system is under, I had no other choice but to take myself to A&E. And you know what? The doctor I saw looked at me and said, “you are out of my skill set. I’m sorry but I have no idea what to do to help you. There’s nothing I can do.” That right there is the sound of my heart breaking. Eventually he said that he could prescribe me sleeping tablets to try to get me through to Thursday when we’d managed to book a private neurologist appointment….my NHS one was April next year – yeah, thanks GP! But, they haven’t worked so…great. I’m trying the ice pack on the head which he suggested but it hurts so much. I haven’t had anything on my head in months so applying a freezing cold pack isn’t the greatest. However I’m persevering because it might start to work…might. It made me wonder, if I walked into the surgery or A&E with my head literally on fire and ants crawling all over my face with pins attached to their feet – would they have sent me away so casually? I think not. Hidden illnesses are brushed away so easily, it’s quite scary.
And then we get to Thursday. Mum and I hit traffic on the way to the private neurologist appointment we made which led to her using a phrase I have never heard pass her lips but did break the nervous air that was surrounding us… “shit the bed!” The neurologist was very nice, South African. Mum was obviously nervous because he asked if we minded him just popping to get a glass of water when we went in and mum replied (in a very poor South African accent) “sure, no worries mate.” I mean come on mum, taking the p*ss out of the man who we have all our hopes pinned on?! But we did giggle, mum said she has no idea why she said it, it just came out – and I suppose we should always have a story to tell right?! We giggled more when I had to strip off and don a very fetching gown – all pre tied in a little scrunch at the front – that’s what you pay for when you go private I presume?!
Annnnnd guess what? There is nothing he could suggest for the time being. So that is my GP, a doctor in A&E and a neurologist that cannot suggest anything to help me right here, right now. I am trying so desperately to stay positive but it’s hard. I can’t stand what is going on in my head. I’ve got my little coping strategies to stop me every time I reach to itch my eyes or scrape my head with my fingernails. I’m writing lists left, right and centre, planning blogs, watching rubbish TV, planning future ventures all to keep my fingers busy and away from what they really want to be doing which is to rip the skin from my body. I try to lay and rest and hope that my over tired, crying from the inside out body will sleep and have some freedom for a few hours yet laying still and doing nothing means I can only focus on the pain and the burning and the itching so my body is reignited and sleep gets further from my reach. It. Is. Horrendous.
He did however say I needed to get an MRI and C Spine scan urgently and luckily I was able to get one book in (privately) the very next day. It was at 8.20am so you can imagine how getting up to London that early was for me! I think I was rather naive about the whole situation. I got into the scanning room and was told that the scan was going to be incredibly loud – never even considered that, so immediately I was on edge because of my noise sensitivity. Even through the ear plugs and ear protectors they gave me it felt like my ears were going to explode. The first 15 minute scan I had, a grated head-piece was placed over my head and as I was slid into the machine I suddenly realised that I was in fact quite claustrophobic – they do say you learn something new every day! The panic bell they gave me was almost squeezed several times – I went into full-blown panic mode. But then I talked to myself quite sternly: There are worse things in the world. Imagine you’re on ‘I’m A Celebrity’ and you need to win those stars for camp! It’s fifteen minutes you wimp – man up. It’s only noise, big deal. And then, for some reason, Shania Twain, ‘That Don’t Impress Me Much’ entered my head and I hummed away to that for a while. Intermittently the noises and patterns on the machine sounds would change which would over ride my train of thought and plummet me into breathlessness and near on full blown tears.
But then I was brought out of the machine, the grate removed and a new head-piece applied – equally as awful and then, back in I went. It was worse that time because I knew what was to come and I knew how long 15 minutes felt! But….back I went, making lists in my head, thinking of how I could make some money, picturing my favourite places in the world etc etc and then..out I came – I DID IT! But…no no no, they forgot to tell me there was one last scan to go…of my chest. So a wedge was applied followed by a heavy-ish plastic plate which seemed to push down on my chest so I was suffocating but back in I went. That was the longest 15 minutes of my life.
When I finally came out and sat up I felt so light-headed. I thought I was either going to faint or be sick. But Dad was there waiting and let me cry and sip water until I was ready to leave and off we headed to John Lewis for a smoothie and croissant! He even let me have a little wander round their Christmas department! Dad’s are heroes right?!
I’m glad that’s all done now though and I only have to wait until Thursday for the follow-up appointment and results. I desperately hope that something shows up – nothing too bad, just something fixable. Because if nothing shows…what do we do then? (Let’s deal with that at the time eh?!) As always, humour came into play and a message I received from Carly on how she pictured my situation made me howl with laughter – she was picturing me from Silence of the Lambs and wondered if I was more like picture 1 or 2…I’d say a combination actually! Carly Dean – legend!
That afternoon I went back to my doctor’s surgery and saw someone else – not my GP – and begged, once more for some help. He has given me some Tramadol to try to stop the pain from the burning but because its neurological pain it may not work but I will try anything. Apart from that, he also said there was nothing. Take the pain killers and the sleeping tablet and see what the neurologist says when I get the results back. Joys. And a little silver lining is my dermatology appointment for May 2017 has been moved to January 2017 – it shows how desperate I have been when these words left my mouth: “I can live with being bald for another six months as long as something else can be sorted.” I miss my hair every day and detest how it destroys my confidence a little more every week but I can live with it…I can’t live with the rest of it.
I also seem to have had more experiences with idiots over the past few weeks too. On one occasion, for the first time ever I responded but the other two I didn’t and regretted it a little.
Scenario 1: In Boots waiting for my prescription so I buy a few toiletries. A lady next to me is asking the cashier to find the price of something. It’s £38 so the woman says don’t worry and walks off. I am the only customer left so of course, my cashier strikes up a convo with her mate because, you know, that service for you these days. The conversation went as follows:
“What cost firty ate quid then?”
“Some stuff that’s meant to make your eyelashes grow when you lose ‘em.”
“God, if I lost my eyelashes I wouldn’t bovva. It’s only ‘air ain’t it?”
“Yeah, god so not worth it.”
I couldn’t help myself. Not at any point had either of them looked at me as I was being served or gauged the situation stood in front of them, so I drew their attention to it.
“Excuse me, but unless you have been in a position where you’ve lost your hair, not from choice but from illness, I don’t think you have the right to say what you’d be bothered about losing or how much you’d be willing to pay to make yourself feel better.”
My heart was thumping, I was on the edge of tears but felt so angry. They looked so shocked, one stayed silent and the other started to apologise but I cut her dead, I was on a roll.
“I don’t want your apology, I would just like to pay for my things and go and maybe from now on you could be more aware of your customers and what you say or don’t say in front of them.” Conversation..DONE and I turned away and beamed from ear to ear #hairlesshannah had the power that day.
Scenario 2: In the Co-Op. A five-year old looks at me and states, rather loudly to her mum how she is “scared of that lady with no hair.” The mum glances at me, I am obviously looking at her to see what response she gives her child. She just says “SHHHHHH” really loudly. The child then repeats her statement again but points at me this time as well. The mum repeats her response but this time pulls the child around the corner so as not to offend her child’s eyes any further. I work with children, I get that they don’t always understand however, that child was rude, plain and simple. Her mum simply needed to explain quietly that some people are different blah blah blah but she handled it so badly. I got home and said to mum that in a totally uncharacteristic way what I really wanted to do was crouch down in front of that child and say, “you should be scared of me, see you in your dreams tonight little girl!” Obviously I would NEVER do that because I’m a teacher and I’m human but god, it would have taught her a lesson – if only it had still been Halloween and that would have given me the right…right?!
Scenario 3: I got caught leaving Holland&Barrett by charity questionnaire men. Literally the first words from stupid man one: “That’s a brave hair style you’ve gone for there madam.” Firstly – madam?? I am 30, please! Next, “so why do you choose to have it that way?” And I failed here with the come back I prepared because, as always, I was flummoxed by his sheer front, so I just replied that I was ill (normally I’d say alopecia but that day I felt ill so that was the natural response). On comes the cancer assumption. “Well madam, I’ve just spoken to a woman who has survived ovarian cancer twice so I’m sure you are going to be just fine.” Wow. So I stay silent and am just about to say thanks but I need to go when his colleague, stupid man two, comes over and immediately says, “I’ve just grown out my hair from that style, hated it.” At which point first stupid man is giving him a look and explains that I have cancer and that I am going to survive it because I’m a fighter. Wow. I looked at them and just said, “I have to go.”
So there you have it. My two weeks summed up in under 4000 words (sorry it’s been such a long one, but I feel like this blog has been like talking to a friend I haven’t seen in ages with lots to catch up on! Well done to those of you who have read to the end!) But on a serious note, contrary to this somewhat down beat blog, I haven’t let myself get too down. I’ve had fleeting moments, well hours, sometimes days, where I have felt totally sorry for myself and thought, if this is my life now, it can bloody well do one. However, I am lucky. Even though I haven’t really been up to seeing many people or doing things other than make it to appointments, I have friends who text me, email me, send me balloons with my face on and gorgeous flowers and generally keep me sane from afar. They make me feel like I’m still part of the gang even though I not always physically present. And of course I have my family who, well, are as they have always been, the best.