Chronic Illness

Save the NHS, don’t vote Conservative…

~ somethinginthewayshemoves ~ 1 Comment

I had been having a rough couple days pain wise when things took a turn for the worst last night. By 7pm I was experiencing such intense pain that I could not cope. I have a number of chronic conditions & so live with daily pain. However, this was extreme & unbearable. Luckily for me I have access to the NHS. I called NHS24, after speaking to a nurse I was given an immediate appointment with an out of hours gp at my local hospital. I was seen swiftly by a nurse who checked my vitals & then by the GP who examined me. He concluded I had a possible infection, which combined with a flare of my stomach problems was creating the pain. My heart rate was also too fast, so he made me an emergency gp appointment with my regular dr this morning. He also wrote me a prescription for antibiotics & oramorph. 
Fast forward a couple of hours, I am in my own bed with completely manageable pain level. No longer throwing up or feeling scared. After a reasonable night’s sleep, my gp checked me over again, took bloods & referred me for further tests. Put simply, the NHS is a marvel. 

I am so incredibly grateful to have to expert care 24 hours a day, 365 days a year. Sure, our national health service had problems (many caused by Tory policies), but it still a remarkable assest. As someone with chronic health problems I rely on the NHS. I could not cope without it. In truth I doubt I would survive very long without free at point of access healthcare. I could not afford to pay for the 2 or three medical appointments I need each week. I would never manage to pay the unsubsidised costs of my many medications. Frequent hospital stays & tests would be beyond me. My pre existing conditions would make health insurance difficult to obtain & ultimately prohibitively expensive. Without the care I receive from the NHS, I would suffer greatly & possibly die. 

My story is not unique. There are millions of people who rely on our health service to survive. Beyond that there are all the people who can’t afford co-pays & prescription charges for our if the blue illnesses. Even if you are super healthy & financially stable disaster can strike at any time. No one can predict when their health might take a hit. Cancer, car accidents, depression, job loss & a million other conditions can happen to anyone. Life changing events rarely come with a warning. You never know when you or someone you love might need medical care. We all need the NHS. 

Does anyone want to live in society that puts money before saving lives? Do you want parents to be unable to take their sick child to the dr because they cannot pay the bill? Do you want insurance companies to have the deciding say on what treatment you can access? If the answer to these questions is no, please use your vote. If you care about the vulnerable & less fortunate members of your community, please do not vote conservative. 

When you step into that booth today, make saving the NHS part of your decision. Accessible health care for all is fundamental to a fair society. Please, vote for whichever candidate can beat The Conservatives in your constituency. 

The Summer Smiles…

~ somethinginthewayshemoves ~ 3 Comments

This weekend was a very rare thing, a sunny bank holiday weekend. I made the most of the weather & have been the busiest bee. Of course, me being me, I forgot to photograph most of my awesome outfits. I was too busy looking hot & having fun. Luckily for you I did manage to capture today’s look. 


In keeping with my usual aesthetic I jumbled up colours & prints. I am very pleased with the look. Today was a fairly easy going day; visiting Dad, then errands & photos with my sis. I wanted something I felt pretty in that was also a low effort wear. The sun had deserted us, but I was still in summery clothes mode. The resulting combo ticked all my boxes. 


Dress – Forever21

Top – Taking Shape*

Biker Jacket – SimplyBe

Bag – Craft Fayre


After Barbecues, a beer festival, frozen cocktails & family fun with my baby nephew I am exhausted. My knee is giving me hell & the fatigue is starting to show. I have tackled this with my new beauty trick; distraction lippy. The brighter my lipstick the less folk notice any signs of burn out. This purpley/pink has served me well. 

As I write this it is pouring down outside. It’s just as well I had so many summer hijinks this weekend as the season may well be over in Scotland!


* Item was gifted, but opinions remain my own. 

My week (ish) in pictures…

~ somethinginthewayshemoves ~ 2 Comments

I’ve not been the busiest of bees. I’ve had some minor illnesses dragging on & that has slowed me down. Thus my outfits are slouchy & my snap shots somewhat indolent. 

I’ve caught my city looking pretty in the sun & also the pouring rain that soaked right through to my knickers. There has been a lot of resting with Bronan. Plus plenty of time wasting selfies. 



I visited mum & her beautiful poodles, indulged in comfort food & noticed some lovely details on familiar buildings whilst the toy boy bored me with football. 


There has been nail painting, anti biotic gobbling & languorous layering of clothes. 

I was awoken by the toy boy’s kitten grooming me with her very tough tongue. Luxuriated in Joan Didion’s words & expressed some opinions via my badge collection. 


And just like that I give you the life of a procastinating freelance spoonie.

Blackbirds singing in the dead of night…

~ somethinginthewayshemoves ~ 2 Comments

It’s 5.07am. There are some very loud birds outside & the light is creeping around the edges of my blackout blind. I haven’t slept, but I do finally feel a little bit sleepy. Do I sleep? If so I might sacrifice the day. After no more than a couple of hours for the last few nights I might conk out big style. I wanted to do something today. Something nice enough to make me feel like I’m participating in normal life whilst still being easy. Sleeping all day does not fit the bill. Although, perhaps I’ll wake up feeling rested & be productive. If I could complete one of the many, many things on my to do list it might relieve a little anxiety. For now I’m stuck in the vicious crazy circle. No motivation + no energy = accomplishing nothing. As the things I have not done pile up so does my anxiety. Until the undone things & the anxiety are so huge that I’m paralysed by their weight. I’m just stuck underneath, stressing & not sleeping & feeling increasingly worthless. So, maybe I should sleep. I’m exhausted. I’m always exhausted because I never get enough sleep. There is always something keeping me awake. Be it pain or fear or coughing or nightmares or vomiting or the terrifying vagueness of insomnia. Right now I feel that illusive part of tiredness that usually escapes me. The fuzzy comforting drowsiness that signals actual sleep is a possibility.

But

If I sleep now, chances of sleeping tonight are slim. I could miss the chance to do a thing that could make me feel something other than grey or jittery. If I close my eyes now I’m risking the dreams. Flashing scenes dripping with all the things I cannot bear to look at again. Flickering images soaked in feelings too potent for consciousness. Then I’ll wake in a mess. Heart pounding, breath hiding & I’ll have to talk myself down. Fool myself into a calmness that’s counterfeit. Either way the day is scuppered. All those hopes for lightness dashed. 

So, I stay awake. I’ll just wait in this cool dark room for the day to really get started. Force myself into the shower. Try to make a plan that doesn’t feel overwhelming. Push down the fatigue & the jangling of every nerve for the possible reward of OK. Reassure myself that this isn’t forever. Repeat that I am not back in the hole. It has been a difficult month. I am allowed to feel bad. Tomorrow or the next day or the day after that will be an easy one. Just keep going. Swing from one pleasant moment to the next & hold my breath through all the rest. 

This will pass

I will write the things that are over due

I will do some god damn washing 

I’ll cook a proper meal 

&

Wash my hair

Peace will be restored 

Life will go on

&

I will live it. 
If only I could get some sleep…

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Mental Health Platitude Week…

~ somethinginthewayshemoves ~ 4 Comments

It’s National Mental Health Awareness Week again. Regular readers will probably have spotted how I feel about this sham, but for the avoidance of doubt I’m going to go at it once more. I ask you to forgive my lack of finesse. I’m riddled with infections, haven’t slept & more than a little frustrated with the subject matter.

Some of you may be thinking, wait, raising awareness about mental health is great. You are of course correct, but this week (& most mainstream MH campaigns) is just lip service. At best it’s platitudes & at worst it’s dangerous. If you check the hashtag on social media you’re going to see a lot of posts extolling the virtue of talking about your troubles. Talk will apparently cure all that ailes you. Ask for help & you shall receive. Pro Tip, It won’t & you won’t. 

On the help front you’ll be up against the limitations of the NHS. Cuts to mental health services have been particularly brutal. Even if you have the good luck to access a Gp who takes you seriously & correctly refers you in a prompt manner, your wait will be long. What’s worse is that the correct help is unlikely to be at the end of your wait. A shocking lack in resources of every kind results in most people being offered short courses of cheap therapies like CBT. It will come as no surprise that with mental illness one size does not fit all.

 Even in acute circumstances there are no psychiatric beds available. Many people have to travel long distances to access inpatient psychiatric care. Meaning they are far from family, friends & comforts in their darkest moments. If you’re a child or adolescent those resources only get scarcer. So, that’s frightened children waiting in misery to access services that may be of no use to them anyway. All of which is a far cry from just talk & salvation awaits. 

As depressing as all that is I haven’t even broached the fact some people never get as far as a waiting list. For many there is no sympathetic ear. Their gigantic leap of faith is met with ignorance. Employers do still discriminate against the disabled. There are still Dr’s who will tell a person to pull themselves together. The worst stigma I ever faced was from medical professionals. All of which means awareness is great, but money is better. Proper funding is the answer to our mental health crisis & it is that is what we should be talking about. 


The money problem doesn’t end with NHS funding. Our government is trying to eradicate disability benefits for mental illness entirely. The process of applying for PIP or ESA is exhaustive. The categories for qualifying are constantly shrinking. Our benefits system currently subjects vulnerable & very sick individuals to the most humiliating process in order to survive. That mental illnesses are purposely targeted for exclusion is government sanctioned stigma. Ah, I hear you cry, we do need awareness.  Well here’s the thing, we don’t need the bullshit being touted by the mainstream orgs. All those articles about exercise & healthy eating & a hot baths & nice cups of tea are just shoring up that stigma. The idea that mental illness can be cured by any of those things minimises it’s very nature. It encourages the notion that people with long term mental health problems just aren’t trying hard enough. That in turn legitimises the governments disgusting witch hunt. 

And we’re right back to my original point. Awareness is fine, but real change is the key. If you truly want to make a difference you need to tell your elected representatives that mental illness is a key issue for you. Sign petitions, attend marches, get informed. Read the difficult articles. By all means challenge stigma when it crosses your path & listen to anyone who chooses you as a confident. Do all of those of things, but I want to be clear, there is one crucial thing that will hand more impact than anything else, DO NOT VOTE TORY. 

A week (ish) in pictures…

~ somethinginthewayshemoves ~ 4 Comments

It’s been more like 3 weeks & they haven’t been the most productive. I finally painted my nails today & I have some appointments set up this week for oPeration BoPo. Life goes on & so do I. So, there will be more exciting & uplifting posts coming soon. For now, here’s a wee photographic glimpse at my quiet days. 


Bright days, escapist movies & lunches with my sis have been soothing.


Spring flowers & spring cleaning (it still counts if you pay someone to do it, right?) have helped with that starting over feeling. Pretty skys, my pretty cat & effective drugs have also done their thing.


Easter treats, thrifting, lazy days & random sights have helped to ward away the deep blues. My puss cat in both snuggle & grump mode is a tonic. Oh & look at my nephew’s face; it doesn’t get more life affirming than that. 




Rest, dancing light in my home & the beauty of my own fat arse have given me a boost this weekend.  I’m hoping it will carry me through the week.

After all, as Scarlett O’Hara would say, tomorrow is another day. 

I’ve got tears that are scared of the facts…

~ somethinginthewayshemoves ~ 10 Comments

My baby was the size of a large olive. Almost all of her vital organs were formed. She had tiny finger nail buds & her body was covered in fine hair. And now she’s gone. 

So, I’m writing my emotions because I can’t bring myself to verbalise them & they have to escape somehow. 

With my health & my history this wasn’t unexpected, but that didn’t make it any less shocking. Being pregnant again was scary. It felt unreal to begin with, but I had started to believe that this was my time. The fear never left me, but the hope grew. 

I felt very pregnant. I still do, which seems particularly unfair. Sickness & nausea & cramps & sore nipples & peeing or crying every two minutes. Strong smells became my nemesis. I haven’t even been able to wear my own perfume. Pregnancy ruled out almost all of my normal meds. I’ve basically felt horrendous but been delighted to suffer. All the pain & discomfort meant my body was doing the very thing I didn’t think it could do. I worried about every twinge, but I also relished them. 

I felt like we were having a girl. He never said so, but I think maybe the toy boy did too. We talked about girl’s names so much more than boy’s. I talked & thought too much about too many things. 

Names & maternity clothes. 

The best way to tell my neice & when to tell the rest of the world. 

Which stories to read at bedtime & what songs might lull my baby to sleep. 

Painting tropical leaves in the nursery & learning all that baby wearing stuff. 

I really thought this was it. All the stars looked aligned. I got caught up in believing that I could have this & amongst the heartbreak I feel furious. I’m so angry with myself for not protecting the most vulnerable part of me. I’m angry that my body won’t do what comes naturally to so many. I’m angry that I have failed again. I’m angry that the world keeps doing this to me. 

Behind the anger is real fear. I am so scared that I can’t get through this again & even more frightened that this will be my only experience of pregnancy. The idea that carrying a life will always end in loss is overwhelming. I’ve worked so hard not to be overwhelmed by what life has forced upon me. I’m terrified of losing myself in madness once more. 

I’m still very much in the process of losing this baby. I know she’s gone, but my body doesn’t seem aware of it. I still feel pregnant. I don’t feel able to take any of the meds that I know will make this easier because I haven’t detached from the need to protect this little life. I have avoided speaking to even those closest to me because I’m just not ready to completely let go of my beautiful dream.  I’ve been able to do this partly due to the support of my lovely toy boy. To be taken care of without having to ask is a powerful thing. Having a companion in this is a new experience & a huge blessing (a word that will have him shaking his head), but it’s true. 

I feel much less alone. This child feels acknowledged & important. That’s a both a comfort and fuel for my guilt. I am aware that I am culpable for creating the situations that led to my boy not mattering to others in the same way. I’m also clear that it is my body that failed them. It’s acutely painful to live with that knowledge; no matter how unwilling the neglect. 

Isolation isn’t the answer. I know that, but I need some time. I have to let my body & my heart get used to the idea that I won’t be nurturing this child into life. I appreciate everyone’s patience. 

That girl is strange no question…

~ somethinginthewayshemoves ~ 7 Comments

It temporarily spring in Glasgow. I say it’s temporary as rain is forecast from 2pm tomorrow until always & forever. Nevertheless it was a beautiful weekend. Unfortunately I missed every second of it because I have been the most nauseous person on the planet. When the sun came out again today, I felt it necessary to capture at least a few blessed rays. Thus despite feeling yuck, I ventured out. 

I’ll be honest though, I didn’t go far. A quick stop at a local park followed by sushi & film was my big adventure. I tried out this new shirt dress & was pleased with both it’s cuteness & comfort. Comfort is a big thing for me at the moment, given that my body has stopped believing in my right to it. 


Dress – Alice & You

The dress was a success, the rest of the night, not so much. The only film showing at the right time was Beauty  & the Beast; it’s shite. Trust me, you don’t need a longer review. Oh & the sushi didn’t even stay in my stomach until the end of the film. You know your film is bad when you’re not even worried about what you’re  missing mid vom. 


I know, my face looks grim in these pics, but look how cute my nails are. 

Let’s talk it over…

~ somethinginthewayshemoves ~ 3 Comments

Chronic illness is a bitch. The pain, the uncertainty & incapacitating symptoms are all a daily battle. Oh, but there is so much more. More that isn’t really talked about outside of spoonie circles & I thought it was about time that changed.

Obviously chronic illness covers a huge range of conditions & everyone’s experience is different. Thus I talk from my own personal view point with some input from fellow spoonies. Here are some of tricky issues that we’re quietly dealing with.

Travel

I mean any & all travel. From trying to get a bus to a hospital appointment to trying to cross the globe. The world is not spoonie friendly. 


Have you ever sat in those seats at the front of the bus that are meant to be reserved for ‘elderly & infirm’. I’m sure you tell yourself it’s fine because you’ll move if someone needs them, right? Well, you can’t always tell by looking that someone needs that seat. Having to explain yourself & ask a stranger to move is not easy. Thus I have collapsed on buses, cried from pain & just had to get off because I couldn’t stand any longer or make it to a seat further back. Which is a pretty good good analogy for trying to get about with disabilities. It can be hard as fuck without anyone noticing. 

Being chronically ill means planing every single outing in detail. Working out if you can manage to get to a bus stop or from a station to the place you’re actually going. Thinking ahead about stairs & where toilets are. Planning when you’ll need to eat, if you’ll be able to eat & how meds will work around that. Worrying about queues & how slow you move & often you’re going to have to sit down. 

I can’t tell you how many times I’ve not participated in something I wanted to because the logistics were just beyond me. 

Relationships

Whatever your illness there will always have to be that early days conversation about what exactly is wrong with you. In my case I have scars to explain & a whole bunch of fairly scary details to talk about. In the beginning I thought that would be the hardest bit, but it so isn’t.
The worst part is all the normal things that are so much more complicated for me. I am completely aware that sometimes I’m no fun. I say no more often than most people. I have many (too many?) limitations. I’ve adapted to that, but I never know if others will. 

It’s scary & stressful to try someone new. They might well get fed up accommodating me. Every time I say I can’t make a social event or have to admit that I don’t fell well, I worry. Maybe this is the point they’ll decide a spoonie girl friend is just not worth it. The truth is, I wouldn’t actually blame someone for having those thoughts. After all, life is for living .

That’s the real kicker, it’s not a problem that can be resolved. Wanting to live a life that I’m not fit enough for doesn’t make anyone a bad person. It’s just another thing I (we) get to think about when I can’t sleep. 

Side Effects

Sometimes the treatments are worse than the illness. Almost every medication I take produces a side effect that impacts on my life. In fact I take medications to help with the side effects of my medications. I’ve taken drugs that have made me vomit, itch, gain weight, lose weight, have double vision, dizzy spells, palpitations, acne, the list goes on. 


Every treatment one is offered comes with a list of possible side effects. Chronic illness is a constant balancing act. How much relief will I get from my symptoms & will it be worth the new problems it will cause? 

I often illustrate this problem like this.

Severe anaemia can cause itchy skin & angina. 

A blood transfusion & opioids can treat these complaints.

Guess what a major side effect of both transfusion & opiates is, yup, really itchy skin. 

Welcome to the conundrum of chronic illness. What cures me might well kill me to. Fun!

Money

Hardly anyone likes to talk publicly about their finances. It’s awkward & it’s private. I hate talking about money, but honestly with regards to disabilities, someone has to. Having any kind of disability almost always screws you financially. What work you can do is limited. Employers will silently discriminate against you & the current  government will loudly throw you to the sharks. All the while ones disabilities will incur extra costs at every turn. In terms of cold hard cash, illness will cost you. Lots. 


The Embarrasment Factor

Never underestimate the power of embarrassment. All of the things I’ve discussed here can make a person feel really small. Be it feeling red faced about a misbehaving stomach or the facing soul destroying humiliation of having to justify your right to be alive at an ATOS assessment. Humility is a lesson spoonies learn over & over. 


Imagine how you felt the last time you farted somewhere you wish you hadn’t & the feeling of falling over on a crowded street & having to talk to a dr about a really cringey complaint & admitting you’ve failed at something important & having to tell the world that you need help with things everyone else can do. Now imagine coping with some combination of all the above every day. Welcome to my world. 

Transforming mental health through research…

~ somethinginthewayshemoves ~ 1 Comment

I have struggled with mental illness for most of my adult life. I have written here before about the difficulties I have faced & the massive impact my illness has had on my life. As painful as my issues have been I have always been incredibly grateful that I faced them as an adult. The growing crisis in children & adolescents mental health care demonstrates that not everyone is so fortunate.

Currently 3 children in class have a diagnosable mental health issue. Despite early intervention being a key factor managing mental illness, children often do not have access to specialised services. Many young people are trying to deal alone with problems of a magnitude that defeat adults.

MQ Mental Health Infographic[754]1.png 

There has been much talk of mental illness reaching parity with physical in terms of funding & priority. However, there is still a vast shortfall in mental funding. It is clear that the descripency in care for young people facing mental illness has long term impact on not only individuals, but also society at whole.
The only way to defeat the stigma attached to mental illness is to treat psychiatric & medical problems equally. We must make it easier for children to not only talk about mental illness, but to actually access the treatment they need.

MQ Mental Health Infographic[754]2.png

As I said there have been moves towards redressing this shortfall in mental health funding & research, but it has to be solidified. In order to guarantee this sustained political will has to be garnered.

If you feel, as I do, that this is a critical public health issue please get involved at http://www.mqmentalhealth.org