Something to talk about…

A couple of weeks ago I got in a taxi (not an unusual occurrence) & engaged in the usual polite conversation with the driver. The weather, had I had a nice day & so on. Then he went quiet for a minute & said ‘can I ask your advice on something?’

This is the kind of question that usually rings alarms bells, but for some reason I decided to give this guy a chance. He had talked about his children in our short conversation & came across as a decent person. I’m glad I trusted my gut. He wanted advice on how to help his son, who had been self harming.

The taxi driver never alluded to my scars, but I presume that’s why he thought I might have advice to offer. He explained a bit about his son. How he had changed schools after a move, found it hard to make new friends, become more insular. Then how his wife had discovered their son had been injuring himself & how they were both lost. They’re son didn’t want to speak to anyone about it, they didn’t know if they should force the issue. He was increasingly unhappy, so far their attempts to help had been unsuccessful. It broke my heart. This man clearly loved his child. It was just as clear that he was utterly out of his depth.

So, I told him I had experience with self harm. Explained that it could serve a few functions. That is was habit forming & yes, it was a sign that his son was really struggling. I stressed that I wasn’t a professional mental health worker & that everyone was different, but in my experience it was best to get help as soon as possible. It was also important not to make his son feel forced into anything. Research some options & present them to his son, try to let him make choices. I suggested he make it clear that he & his wife were always available to talk about anything & offered some organisations he could contact for more advice. That was about as much as I felt able to say to a stranger during a taxi ride. I didn’t know any details of what was going on for his son, so I didn’t know what would be best for him. It felt insufficient, but when we arrived at my destination he refused to take payment. He said my words had lifted a load because now he felt like there was help for his son & he had an idea of how to find it. I got emotional, wished him the very best & thanked him for my free lift home. We parted & are unlikely to meet again.

So, why am I telling you this? I’m sharing because the more I think about it the surer I am that this kind of thing should happen more often. I think the reason it doesn’t is stigma. That taxi driver took a chance; he shared sensitive information & asked me to do the same. He dared to break a taboo & admit that he needed help. The result, hopefully is that his family will find that help. How many people struggle with mental health problems and never find the courage to ask for help? How many people just never know who they can turn to?

I’d love to live in a world where it didn’t even take courage to tell someone you’re hurting. It shouldn’t be so hard or so hidden.

If you are experiencing mental health difficulties it is imperative that you seek help right away. Mental Illness almost always get worse & harder to treat when left to fester. There is no shame in not being ok. You deserve any & all hell to feel as good as you can.

Your GP is always a good first step. Take someone you trust to advocate for you if you can.

MIND offer a variety of local services. You can find the in your area here.

SANE offer specialised mental health support. You can contact them on 0300 304 7000.

You can also call The Samaritans 24/7, 365 days a year on 116 123 or email jo@samaritans.org

I don’t know where I stand…

About 7 months ago, after years many years of knee pain & a limp that had become almost permanent I had an X-ray that revealed arthritis. After even more pain & increasingly frequent falls my Dr recommend a walking stick. 

I had been experiencing pain in my right knee for years. When I first mentioned it to a Gp he put it down to a small accident I had whilst playing with my niece. I had plenty going on health wise & at the time it wasn’t a constant or severe pain, so I left it at that. The knee got progressively worse & I mentioned it a few times to various gp’s but no one was worried & it got sidelined by more immediately pressing health issues. By the time I really couldn’t ignore it anymore I had been diagnosed with fibromyalgia. The knee pain was attributed to fibro & that was pretty much that. The pain however continued to get worse. It hurt all the time, standing or sitting. It even  woke me in the night. Then came the swelling, then the limp shortly followed by the knee giving way & me falling on my arse more than once. Back to my Gp I went, but only to seek advice on what might help my knee; I believed it was fibro related. Finally, over four years later I was sent for an x-ray, which revealed significant erosion in my knee joint. I didn’t expect to have a condition like arthritis at 37 & I certainly never envisioned myself with a walking stick, but here I am.

Foot & walking stick

There are so many things I could say about the difficulties of getting a diagnosis or even investigations when you have chronic conditions. So often when medical professionals see things like fibro in your notes they will just link everything to that. When you have multiple chronic conditions  multiply the difficulty. Add to that mental health issues, being a woman, being fat, the drs who think everyone with chronic pain is drug seeking & honestly, I’m just exhausted. Yes, it could have been spotted sooner. Yes, I would probably have a better prognosis if it had, but at this stage I’m just too tired to even think about that. There isn’t anything that can done about it anyway. It is what it is. 

Unfortunately what it is is pretty shit. On a number of levels. I hate to admit it, but there’s been a real mental adjustment along with the physical. I find it really hard when people see me with the stick for the first time. I worry that they’re thinking, oh god, she has another thing wrong with her. I worry that they’re embarrassed. I worry that I’m just too much of an inconvenience. 

I hate it, but a walking stick is a blow to the self esteem. I don’t feel particularly sexy as I hobble along, so obviously I question if others will view me differently. Intellectually I know there is no weakness in disability, but emotionally I feel weaker. I feel less useful.

Less fun.

Less appealing. 

All the while I’m telling myself what nonsense that is. That I know better than to indulge in such ableist thinking. Then I think if I, a disabled person am having these thoughts, then others certainly are & that’s not a productive thought process. I’ve already experienced how ignorant the world can be. How many people will still push past me or not offer me a seat. I’ve learned that places who bill themselves as accessible, just aren’t (and my mobility is still so much better than a lot of people’s). The weird thing is, I think the kind folk are almost harder to take. Every time someone offers to let me skip them in a long queue or asks if I need help, I feel utterly exposed. I’m grateful for the seats & the consideration, but I still feel very vulnerable about needing them. I’ve put so much stock in the power of being independent & capable that another level of disability is a struggle to accept. Yet, writing those words feel very indulgent. How dare I ‘woe is me’ when things could be a millions times harder, as I know they are for millions more if people. I know some of this linked to my mental health issues. There are familiar themes here; shame, guilt & a big helping of get over it. I suspect though, that maybe these feelings are pretty common for those dealing with disability. Thoughts & feelings aside, life is just a bit harder. For me & I’m sure for those around me. I’m slower & more limited. I can’t go anywhere without checking a dozen things beforehand. I’m grumpier & less reliable. Spontaneity is out, relentless checking is in. I hurt more. I need more rest & assistance. I find everything exhausting. I sound like an absolute joy to be around, right?


Finally, there is the stress. All of the above is stressful. Everyday tasks, trying to do something fun, the future are stressful. Attempting to manage all the stress, is stressful! 

I realise this is all sounding very negative & I don’t want to be that person, but I do want to talk about it. I’d like there to more of a conversation about chronic illness & disability. I’m sure some of this will get easier. Some of it won’t & I’ll have to adjust. Spoonie life is nothing if not challenging. The opportunity to spill my guts definitely makes it a little bit easier. 

No compassion…

I’m 36yrs old, chronically ill and a size 22, I am no stranger to a bit medical fat shaming. Sadly, I have had to develop a thick skin when it comes to interacting with the medical profession. Drs & nurses will say things to me that no one else would dare to. I have had to learn to advocate for myself when necessary & brush off a whole bunch of bullshit along the way. To be honest I thought I was fairly untouchable. I am entirely comfortable with my size & though often tiring to hear the same fat phobic lectures, it doesn’t hurt me. Infuriate, yes, but I never felt unable to deal with it. Until recently. 

Earlier this year I had a miscarriage. It was not my first loss. My previous experiences of pregnancy & miscarriage were hugely traumatic and in fact played a major part in my mental health struggles. Losing another baby was horrendous. I had some complications and ended up having to spend a little time in hospital. The one small blessing was the support system I have in place and the kindness I was treated with whilst inpatient. Once home & physically recovered I visited my GP to discuss my general health & how to proceed fertility wise. That she wanted to talk about weight loss was not entirely unexpected. I know standard advice for anyone overweight talking about having a baby is lose weight. I know drs still hold rigidly to the BMI scale & that there is an upper limit for fertility treatment. I know fat women often have their pregnancies labelled high risk. What I wasn’t prepared for was this gp’s insinuation that my weight caused my miscarriage. So, unprepared was I that I convinced myself that I had misunderstood. I pushed it out of my mind & continued trying to process my grief. However, when I returned a week later and she still only wanted to talk about diet plans, what I ate, what I weighed now & how often she could weight me,I was more explicit. I explained my history of borderline eating disorders, of starvation diets & losing vast amounts of weight only to regain it. I told her I did not and would engage with rigid diets or weight loss programmes. Her response was given my multiple miscarriages, I might want to re think that. I enquired If she was saying I miscarried because I was fat & she confirmed that she thought it likely.

 

I walked out feeling a rage that quickly melted away to sadness. I was left wanting to crawl into bed and never get out again. I have struggled with PTSD for many years; my original trauma was an emotionally abusive relationship & my the circumstances surrounding my first miscarriage. It has taken me literally my entire adult life to get control of my shame and guilt. Years of self harm, debilitating depression, panic attacks, flash backs and nightmares all centred around how the loss of my child and subsequent illness was all my fault. One thoughtless dr had thrust back into that damaging thought cycle. On top of that I have fought to reclaim my body as acceptable. I have had to work to enjoy my life in this fat scarred body. My history is well documented in my medical records and I have personally discussed it with the dr. That truth is she wants me to be thin more than she wants to me be happy & healthy. Her complete disregard for my mental health was cruel. That she hadn’t even bothered to investigate my history before speaking is unacceptable. A cursory glance at my notes would have revealed that I was not over weight at the time of my other pregnancy losses. She would also have seen that I am currently taking a medication for PCOS that causes weight loss. The drug is harsh on my already inflamed digestive system meaning that I throw up daily. In addition one of it’s major side effects is appetite reduction. Hence, I have been slowly shedding pounds since I commenced this treatment. I also have diagnosed gynaecological issues, which are much more likely to play a part in my inability to carry to term. The conversation she forced upon me was not only insensitive, but entirely irrelevant. That said, it is never ok to blame a vulnerable women for the loss of her child.

I have chosen not to see that GP again. I attend a fairly large practise and as a freelancer have the freedom to wait for appointments with another dr. I have yet to confront the issue as it still feels so raw. However I feel a strange sense of duty; I feel I must tackle this to prevent it happening to someone else. I recognise that there were times in my past when this dr’s assertions would have entirely destroyed me. I hate that the responsibility to educate & challenge falls to people like me. I cannot understand why a profession who swear to ‘do no harm’ are so married to fat phobia. Why is care and compassion is so often disregarded purely because a patient is fat?


 

 

Comforts in my bones…

Chronic pain is hard af. Trying to live a full life whilst always hurting is even tougher. Pain relief medications are great, but they have limitations & complications. Hence the need for back up. There are a million products claiming to relieve pain. So, if you don’t know where to start here’s a few options that make my life a little less painful. 


Let’s start with a cheap & easy product. Epsom Salts are available in every chemist for a couple of pounds & super simple. Just pour some into a hot bath, get in & relax. Epsom salts don’t offer any long term relief, but on a day when my body really aches all over they help. Sometimes even that soothing half hours soak can help me deal with a day of pain.

For more sustained relief I love my tens machine. I find it particularly helpful when I have to be on the move. Often even short journeys or everyday errands can leave me tormented. A tens works by sending electrical pulses across the skin & nerve strands. These pulses help prevent pain signals from reaching the brain & can also stimulate production of endorphins. I swear by mine, wearing my tens definitely prolongs how long I can be ‘active’. You can attach the sticky pads of the tens directly onto your painful areas & the machine is smaller than a phone. Meaning it can be worn discretely under your clothes & is totally mobile. It is possible to borrow a tens from the NHS, but they are also pretty affordable to buy. I bought mine from Argos for around £20, there are of course much more expensive ones if you want something really fancy. 


Heat is another humble, but effective analgesic. I find heat works particularly well for stomach cramps/spasms & achey pains. I use a range of products that provide targeted heat. Adhesive heated pads are great for when you have be mobile. You can pick them up in mutli packs from poundshops & they will retain their heat for 6-12hrs. When I’m at home I favour a good old hot water bottle & heat packs. My very thoughtful little sister gave me an amazing microwaveable heat pack that is filled with wheat & lavender. The smell is divine & it stays warm for hours. You can find a similar one here.


If like me you have stomach issues NSAIDs will be off limits to you. This can be frustrating as ibroprofen in particular is recommended for so many pain types. Which is my I love ibroprofen gels. Again this won’t eliminate severe pain, but it can make you a little more comfortable. I find it very helpful for my fibro knee & shoulder. It is also fantastic for back pain. Ibroprofen gel is available OTC in any chemist, but at around £6 a tube for the strongest formula that can add up. If you qualify for free prescriptions it is worth asking your GP to prescribe it. 

Bringing heat & gels together is Tiger Balm. The balm can be rubbed onto the body & has a bit of heat, but also has anti inflammatory properties. The aroma is a love it or loathe it affair, but I’m firmly the former. Bizarrely I also found this product really good when I had a chest infection. Perhaps it was just the toy boy rubbing it on my chest that felt good, but hey, whatever works! I recently discovered that a similar formula is also available in stick on patches, so you can also use the herbal remedy on the go. I know there can be ethical worries about Chinese medicine, but fear not, dragon & tiger balm are entirely cruelty free. Both products are widely available in places like Holland & Barratt. Again if you are on a budget keep an eye out in pound shops as they sporadically stock them. 


My final suggestion is swimming. I love to swim. My body rarely allows to me do much in the way of exercise, so swimming is a boon. Since the water supports the body stress is lifted from weight bearing areas, which can relieve pain. I find can stretch my body whilst swimming in ways I simply cannot outside of the pool. Swimming is also a great low impact form of aerobic exercise, meaning you can stick two fingers up to the notion of ‘ no pain, no gain’. Even if you aren’t a strong swimmer or can’t manage actual laps, getting into a swimming pool can still be beneficial. Just treading water, holding onto wall/float & kicking your legs or simply walking in the water can really help. Best of all, you can finish your session with a soak in the hot tub or a sauna! 

Obviously you should consult your Dr before trying anything new. I’d also like to be clear that I suggest these to compliment medications & traditional treatments. I take a cornucopia of medications plus physio & other treatments. I could not function without them. I would never advocate ignoring medical advice. 

When the bee stings…

It’s been a dick of a week. Debilitating fatigue followed by intolerable pain & some vomming to top it off added up to a big NO. However, antibiotics, oramorph & a good night’s sleep have made a big dent in my misery. So, excuse me if I get a wee bit Julie Andrews on you, but I wanted to talk about the random things that get me through. 

Whiskers on kittens…

So, starting by just lifting straight out of the song. The whiskers & everything else in one specific feline are definitely one of my favourite things. Some folk think I’m daft, but Bronan really does take care of me when I’m struggling. He’ll stay snuggled up beside me for days. He will wait for me to wake on my own rather giving me his usual breakfast call at 6am. He sits on my feet whilst I’m throwing up in the toilet & gently paws my face when I cry.  He’s a darling. Call me crazy cat lady if you like; I believe my cat has my back. 



Wild geese that fly with the moon on their wings…

We don’t get a lot of wild geese around my way, but the moon can lift my spirits. Be it a dazzling full moon, spooky cloud shrouded moon or rare coloured one; I love the moon. It can be so striking & yet peaceful. Don’t get me wrong, the moon isn’t curing anything. It’s just nice to have something beautiful to gaze on whilst I feel like shit. 


Sunsets fall into a similar spot. A sky alive with colour can be momentarily distracting. Pink skys are always my favourite as they remind me of my muffin. When in Australia I spent most evenings on the deck with my niece watching the sun go down. Every night we frolicked whilst pink hues faded into darkness. It was magical.


Bright copper kettles..
.

Alas I don’t own a shiny copper kettle, but I do love a steaming cup of tea. Mint tea is my drink. It’s a great digestion aid & can help settle reflux. It’s basically an extra med in delicious form. Besides that nothing beats the comforting warmth of sipping a big mug of tea. 

From here I drift away from the sound of music & onto a few more fav things that don’t have Sister Maria’s seal of approval. 

A good book…

I’m a reader. A good book relaxes, distracts, thrills, comforts & engages me. Curling up in my big comfy bed with some quality literature is one of best things in the world. 



A bath that goes with a bang…

Of course I am referring to bath bombs. Sylvia Plath said 

‘there must be quite a few things a hot bath won’t cure, but I don’t know any of them’

Whilst both she & I know that’s not true, a hot bath can be a wonderful thing. Add a bright fizzy bath bomb & you can’t lose. Baths serve so many purposes for me. Hot water eases muscles pain, they relax me, help clear my head & leave me feeling fresh & clean. If you can do all that plus be left with sparkly skin, why wouldn’t you??

Nail (works of) Art…

I don’t know why, but I feel better when my nails are on fire. Maybe it’s because my mum always had glamorous nails. Or maybe it’s because it makes my stubby fingers look more elegant. Regardless, I find it easier to face the world when my nails are a work of art. 


Flower power…

I love to buy myself flowers. I love the scent & how pretty the make any room. Most of all I love the feeling of treating myself. It’s great to know I don’t have to wait for someone else to buy me flowers. Giving yourself something beautiful just because is an excellent feeling. Try it.