Tag Archives: Pain Management

Dear Chronic Illness/ Pain/Conditions Sufferer…

A Message For Anyone Who Is Suffering With Chronic Illness/Pain/Conditions… Especially Those Facing This (whether literally or emotionally) Alone…

I’m so sorry you’re having to endure this — it’s difficult enough to deal with one condition, let alone several and at a severe and heightened state too 😦

The first thing I really do want to say here is: **You Are So Brave**. Truly. What you are facing is truly horrendous and scary (Chronic Illness/Pain/Conditions are utterly terrifying, and people do NOT EVER take it seriously enough! 😡*big scowl*🤬), and yet, still, you face it. You endure it. You keep fighting. You are still alive and you haven’t given up. That is ALWAYS admirable and commendable. Even though you feel utterly awful and exhausted and frightened, it’s still true. So, please try to remember that… 💜

I think I may have some understanding of the awful situation you’re having to deal with — I have had  Chronic Pain and Illness and Conditions, all at a very severe level for prolonged lengths of time, including many asthma attacks requiring emergency hospital treatment (I’m now strangely very comfortable and familiar with the back of an ambulance… 😒🤨), and I’ve suffered more than my share of PTSD with many things that have unfortunately happened to me, and have even attempted the worst at times… And I am well aware of what *I* felt and suffered in those times, and I truly never want to think about what I had to go through with the episodes of psychosis I have suffered on many a pill I’ve been told to take, it was so very horrendous. To be on them continuously, without being able to come off them, must be harrowing. To anyone who cannot come off them, *You* must be very, very much suffering with this… 🥺😟

As an Autistic person (Asperger’s), this also made all these experiences worse [for me] because the way I deal with every small thing in life is that it has to be controlled for me to understand it, and without understanding this (my illnesses/conditions/pain) it made it all the worse… So, I’d like to think I’m coming from a place where you might feel I do have a little understanding of being where you are.

Whatever you are going through, it’s going to feel like such a lonely, awful, frightening place to live — so near yet *so* far from what you truly need. You have, quite possibly, been through such utterly terrifying and traumatic experiences whilst dealing with your journey. I lived in London with all kinds of available people in several hospitals around me — and yet I STILL could not get the treatment I needed for the (many, many!) things that have and are wrong with me, so to not have ANYONE around in the medical practices around you, that is the most scary, almost more than than anything. It doesn’t matter whether or not it’s available, when you’re not being given it, you’re having to watch your life disintegrate around your ears, and not being able to do a thing — not a goddamned thing — to help yourself, because no one told you how. I did ALL the wrong things with mine… If there was a checklist of all the thing that were bad for my condition, I did them all, because I thought I was helping myself. Turns out, they all were the worst things I could have done. Unfortunately, I found out too late. Far too late.

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I have Fibromyalgia and Hemiplegic Migraine, which have somehow amalgamated into some weird-ass crap that doens’t even have a name… something doctors can’t seem to understand or treat, that comes with horrific pain that can only be barely dulled with fairly high doses of Oramorph and Tramadol. My PTSD (now) comes from hospitalisation for a severe blood and bowel infection, and the utter shock and grief of having lost my hard-won “normal” life in London and my pretty amazing IT Career in one fell swoop from this “Fibromyalgia hybrid” (or “Fibroplegia” as I’ve come to call it) that I’ve ended up with (which has also made me almost completely numb and partially paralysed from the chest down), and the fact it took over 2 years to get an initial diagnoses and then a full 5 years to get any treatment at all for it — and by then it was too late, the damage was done and I was wheelchair dependent with no ability to use my legs.

The same thing happened as a child suffering from… something. They called it “Depression” and left it at that, filling me (as a child of 12 and then for many years later) with Prozac and whatever other medication they felt like. Precisely 20 years later, I finally get the diagnosis that really explained it all — “Autism/Asperger Syndrome”. Despite being under them mental health system in so many different ways for most of my life, they ALL somehow missed this, and my miserable life kept getting worse and worse, causing a lot of VERY bad things to happen to me, and I ended up with severe PTSD and suicidal and anorexic/bulimic because of it for over a decade. Unbelievably amazing….

Both times, *despite* bring in the middle of access to treatment, they still refused to give me any. Until now. In that sense, I absolutely do understand how it is to ask and ask for help and nobody listens or understands the severity of your health condition(s). I certainly may as well have had nobody there…

The harrowing [emotional] pain, the physical pain, the anguish, the despair, the panic, the desolation, the desperation, feeling like absolutely NOBODY understands, the loneliness, the isolation (whether or not there are people around you), and also, finally, that hollow and numb-feeling of depression that eats away your insides that causes even more anxiety and panic, making the PTSD flare and get even worse.

It spirals out of control and it’s all just like trying to outrun an avalanche … no matter how hard you try, you’re going to get buried and suffocated with it.

*

I’ve written a lot, and I’m sorry about that… However, like I said above, it’s hard when it seems like nobody understands, so I thought perhaps that I could prove that I probably really do…?

I hope that I have. Because all those feelings that were described is pretty much part and parcel of all chronic illness, and most feel them — but, of course, we’re not allowed to talk about them outwardly, so there’s nowhere to turn and nowhere to go to discuss it, those feelings, or how very VERY white-hot terrified and desperate you really feel inside.

Keep talking, keep reaching out — to doctors, to people here, online, to any people in your life who could/might/do support you. It’s not anywhere near easy to even begin to cope with the first part of dealing with lifelong Chronic Illness/Pain/Conditions.

The first step is a little like AA — you have to accept they are part of your life but you will love yourself anyway. Remember that you’re a person WITH a conditions/illness, and NOT an illness with a body/host.

Remember that you’re worthy, you matter, you’re a person, and YOU ARE YOU — and having an illness/condition doesn’t stop that from being true.

The next is to put into your mind to not being a “Victim” of any kind to your condition/illness — not having access to treatment or a clinician/GP is going to make you possibly also feel like a victim of circumstance, of the Post Code Lottery; but it still doesn’t mean you have to FEEL like one… It sounds so trite, I really do know. But you *should / hopefully might, eventually* feel entitled and rightful indignation that no one is helping you, that no one is taking you as a person that matters and deserves to have their space and be heard, and helped.

I don’t believe anyone should go through these things alone. It’s not right, and everyone has a right to be heard and helped, in whatever way possible. I hope you feel I have heard you?

Keep being strong, keep having courage, and keep up the [terrifying, seemingly impossible] good fight xx xx xx.

💖💖💖💜💜💜

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Fun Times…

Just loving the hemiplegic migraine flare-ups going on right now… and especially loving the extra-excessive spasms and blackouts. Oh, yes… very fun… There’s nothing like coming round without a clue, and you’re somehow lying on the floor with someone trying to wake you up, and you don’t know how you got there, and you’ve just lost several hours to nothing.

Just a second ago, it seems you were just doing something vaguely normal, then suddently it’s many hours later and someone is truling to get you to come round, more akin to after surgery and you’re in Recovery than at home reading something or watching the TV.

Heaven knows where they’re suddently coming from and nothing is keeping them in check. The spasms are ridiculous and never seem to stop, squeezing, contorting, twisting, causing pain and writhing until (hopefully) they eventually get done with the torture.

Maybe it’s the weather…. Halfway up a mountain in soggy Snowdonia is just about one of the worst places to live with chronic illness. It’s April and yet apparently it’s officially colder than it was at Christmas. That whole “Global Warming” thing is definitely misplaced PR – over here it’s definitely “Global Freezing, Soggy, and Rainy”. There’s no “Global” in this “Warming”… The only warming seems to be in the Arctic, where the ice is melting, turning into cold rain, then being dragged over here and dumped right onto us. Yey.

This is also what happens when you’re allergic to meds and can’t take any… and there’s nothing you can do about it. It seems when the weather gets bad, this gets to stupid, and there’s nothing that can be done about it. Yey, again.

The neurologist at least sent a post-haste note in their letter to expedite access to Pain Management, to at least try and help, although lord knows what they can do without giving meds. On the bright side, at least the MRI was clean. And I checked… there was a brain. So there.

Being stuck in the house isn’t helping either, probably. But it’s just one of those circle things where you can’t win: Damned if you do and Damned if you don’t. Extra Yey.

Oh, and did I mention Yey…?

 

 

 


If It’s Not One Thing…

Wow… I still can’t believe I have to survive on less than half of what I used to make when I was working. The term “benefit” is a joke… it doesn’t benefit anyone. Not me, and not the country/government/treasury/whatever. No one. It doesn’t help I don’t get what they say I should… After nearly 14 months I’m still only receiving basic ESA because I haven’t been assessed, and the PIP guys think I shouldn’t have the “mobility” part, despite being wheelchair dependent and housebound from pain. Go figure. It’s being appealed – and you never know, they might actually get to doing my tribunal before I die of old age.

What would benefit everyone would be if I could go back to work. But thanks to cutbacks, I am in no fit state to do any such thing, and I probably won’t be for some time.

It’s a shame they can’t get themselves together here and sort out the NHS and DWP welfare system so it’s fair and works – you should be able to support yourself if you can’t work. Of course, a lot of us would actually be in work if the NHS managers got off their backsides and made it about healthcare instead of bureaucracy and paperwork. I would actually be helped, diagnosed, and if not cured then at least properly supported. I wouldn’t be on 12 months+ long waiting lists for help. I’ve already been ill a year. Now I have to wait another one just to be seen to get some support to try and get a little better.

20120617-233040.jpgIn that time, I could have been sorted out and able to go back to work, even if just part time. Or working from home. Imagine the wasted money… taxes they have lost, the payouts they have made, loss of council tax being paid… I could have paid my way if the NHS wasn’t so broken it can’t even help me.

Going back to a “normal” life seems like a long way away, still. I had imagined that by now I would have been on the road to recovery. The reality has been rather more sobering.

After a 9 month wait to see the pain clinic consultant to only be told my MRI was clear and he was going with “Fibromyalgia” as a diagnosis, he decided the only course of action was to see the Pain Management clinic. Fine. But when I got my Choose & Book letter and went online to book myself in, the website told me there were no appointments. That the next available appointment was “unknown“. That I would be called “by” 27 April regarding organising an appointment. This was to go along with the 12 month CBT waiting list. So it looks like I’m never going to be seen by anyone. Ever.

My GP has now decided that he’s not entirely confident with the fibro “diagnosis” and wants a neurologist to rule out anything else going on. There probably isn’t, but, in fairness, fibromyalgia is supposed to be a “diagnosis of elimination”, and one single MRI scan isn’t really enough to qualify for that.

It is also based on the fact that I’m not getting better… something I’m not exactly impressed with. I was hoping to be better by now. If anything I’m getting worse, but that has probably more to do with psycho-somatical issues (as in physiological responses to emotionally stressful situations) and muscle weakness from not being able to move much. Then there’s also the cold… that has really put me back – though hopefully, with the nice(ish) springtime weather coming in now, that might not be as much of an issue anymore and may actually even help me a little.

On the other hand, you wouldn’t want to miss an underlying neurological issue if there’s one there. But I’d be absolutely floored if there actually was. But erring on the side of caution is always best – it’s always nice to hear test results are negative, even if it does leave you with more questions than answers.

Start OverSo that’s one more waiting list to get on. A third. Fourth overall, but I’ve been discharged from the pain clinic now. They decided I have fibro after one scan and threw me out again. Left me to deal with it on my own. It’s like what happened 16 years ago, when I couldn’t walk and the neurologist decided I had “hysterical paralysis” and kicked me out of the hospital. No tests… he just looked at my medical history, which was all about my mental health problems. Several months later, (private) osteopathy successfully treated it because it was a trapped nerve in my spine – lumbar and neck areas. Not Freud’s pet diagnosis. Nice to see that NHS consultants really know what they’re doing…

Thankfully, I have a GP who is at least willing to fight in my corner – as in the corner of successfully treating me. There is no definitive diagnosis and he wants everything eliminated. I can appreciate that, and I am amazed I have found a GP who actually believes in such a thing. Firbo is a fine diagnosis… but this one not yet one of elimination. There is peace of mind to be gained from knowing that’s what it is, because then you also know what it isn’t. Yes, it would always be nice if someone said it’s XYZ and it’s entirely treatable in amount of time. But as long as it’s the right diagnosis, then fibro is fine. Not really treatable – it’s just about controlling the symptoms – but not life-threatening or dangerous or scary. Which is really fine. I really like that. So fibro is definitely fine.

It looks like it might even be another year until I see anyone, let alone any improvement. I hope this is rock-bottom and that I cannot go any further down or get any worse (touch wood). I can’t live on less than half my usual salary for much longer – it’s bad enough that I’ll have to work hard to get back up to that level and start rebuilding my CV all over again. The more I’m out of the game, the harder it will be.

It is irony that when you have a condition or disability that leaves you unable to work, that you get even less money despite actually requiring more? It’s strange how you don’t think about certain things ever, but then they’re presented to you after you end up being unable to manage things, they seem to be suddenly impossible. You need money to get things – adaptors, special chairs, bath handles or shower chair, a wheelchair, a walking frame or canes, having to go places by cab (especially because the buses are not forced to choose wheelchairs over pushchairs – the absurdity of it! – and so you can’t get on the bus even if you wanted to),

They say you apply and receive PIP to help with all that. Except that’s completely bull. PIP doesn’t go towards such things. It goes towards affording your bills and rent, because your ESA hasn’t been fully-processed and the housing benefit only covers 50% of it – because you live in London and the LHA is completely unreasonable. I got this house because I could afford it (whilst working) – and even then only just about. It’s expensive, but one of the lowest priced places I could get – rental prices in London are insane, even on the fringes. Yet the LHA thinks I should be paying only half of what I am… although still refusing to put a legal cap on private rental sector (which should frankly be legally capped at LHA rates, given you need to be able to pay for your house if you lose your job or become too sick to work).

Trust me, I’d much rather be working. Especially because I love and miss my job. I miss it so much, and so bored of not doing anything that’s like it, I even created a whole detailed analysis and breakdown of utility companies and their offers and prices after being shafted by EDF one last time. I ran as much of a details data collation and analysis on all the companies I could find on Excel, and created a comprehensive spreadsheet breakdown of them all, with the conclusion of the best deal based on all the available information.

After crafting it, I realised I really was being shafted good and proper by EDF, so I switched us over to someone else. Who needs meerkats when you’re bored and have a spreadsheet, eh?

 

 

 

 

 


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