Adventures in Crafting and Post-Covid Long Covid

 So…along with the inevitable recovery from the second bout of Covid (it’s horrendous. I thought it was bad before I had had covid again and now I’m back to three hours of unconsciousness if I decide to shower. Joy. Send an email or read a document? Ditto). Today, I’m feeling knocked out because I decided to stitch up the playsuit from the vintage pattern and… I might have forgotten to check my new measurements (though I recently checked them and they were as they usually are). It DOES fit, only the pockets (macgyvered from another pattern) are pulling and muggins here decided to completely finish the seams BEFORE checking the fit (as I could, reasonably, have reduced the side seam allowance to maybe 3/8 without affecting the overall fit). I can get them on. I can sit down without the seams straining. I do need to work on this pattern again, especially if I want to sew it up in anything more robust for winter and, in all honesty, it might work really well in a substantially thick knit without much stretch (not that I know how to sew knits. I am scared of them and I don’t have a properly serviced and working serger). It was a worthwhile experiment, but I’m going to tinker with the pattern again - which is Simplicity S9792 vintage from Jiffy range. The pockets came from a tunic/dress McCalls pattern as it didn’t have internal pockets with the pattern. I just have to find buttons, sew on suitable sized snaps (which I don’t have) or skirt closures (which I like and do have) but safety pins will do for now and if it comes to it, I’ll just sew buttons right through all the layers of fabric. My zip installation….worked. It’s been a while since I put one in and it kind of shows a bit. I am pretty sure I was using the zipper foot - again, I should have checked. I also need to hem the legs and work on the back legs pattern a bit.

I do like this pattern, not least because the zip fastening makes it really easy to get into, which is importantly if you’re disabled. The shoulder design is also useful if you’re expecting to have to spend time on IV/post surgery and with chronic conditions, opting to buy patterns which are easily adjustable to these considerations is important. Same with being a wheelchair user. I’ve found the Cashmerette advice in the book Adjusting the Curve to be really helpful with this. Increasing the seat (aka over the backside and up to the waist) is really important (I was already doing this with my sway back, but now I need to increase that more), but I’m also now having to adjust for the overhang at the front (something I think was MAJORLY affecting the playsuit at around the hips), adding leg length to account for sitting in a wheelchair and so on.

In other news, my experimental Knickerbockers worked really well and I’m very pleased with them! I’m toying with the idea of not bothering with the whole closure on the leg thing, though it did work, and just using elastic and coming up with some kind of fake button tab thing. Though it does work and looks cool! 

Anyway, I’m off back to check the fit of this thing as I wait for a drain engineer to come out on an emergency and hem the legs. Later! 

Well, it’s been a while

 To be honest, I had not realised it’s been almost a year 😲. I’ve been busy with long Covid advocacy and it’s exhausted me to the point of relapse. And I have Covid again. Somehow. I’m so cross, as I’m Covid cautious. One of my cats had to be put to sleep, but I have welcomed two ginger ninjas who Archie is happy to be around.

We have had a change of government, after one of the worst winters & springs in terms of politics. I’m not hopeful about the new government, but at least they’re not Tory. Same rhetoric on disabled and chronically ill. And the disabled & chronically ill with Long Covid are currently not well enough to challenge this effectively. Not with everything else we have to do.

I’m currently having to buy a whole lot of new splints and shoppers. With my pension being 1/3 of my former income, even having full ADP and a bit of ESA, it’s not really enough. I also need to fund a power add-on for my manual wheelchair (what I need isn’t funded under motability). I can’t just get cheap splints. I’m managing with a new thumb one, but it will need a decent new one soon, plus I need two to deal with my dropped foot and spasms issues.

I do have a cleaner back. This is a huge relief. I’ve at least got a clean home twice a month. I am still waiting to see a social worker (nearly 18 months at this point) for a personal assistant assessment. I’ve also been diagnosed with sleep apnoea secondary to Covid in 2020, but the waiting list to be seen for APAP is long. PoTS is an ongoing issue. My local trust still refuse to permit prescription of medications for MCAS, even with a new letter from one of their own recommending it. Speaking of which, I now have to get my records updated, as you need them for benefits stuff. I absolutely hate this - I don’t understand why the agencies can’t access these records themselves.

Due to all the work I’ve been doing for the Scottish Covid Inquiry, I’ve not been able to do anything much else at all. Craft took a back seat, my other LC projects also did too. I’ve taken part in some research projects and studies, but social media is a low priority and recently my hand tremors and cognitive dysfunction started again. That’s frustrating beyond belief.

I did shorten some old PJ pants into shorts, not that the weather is good enough to use them, with two more sitting waiting to be done. I have cut out pattern pieces for planned makes (the fabric has arrived and been washed). Then I realised the big ironing board is in the cupboard behind the new cat litter tray… 🤦🏻‍♀️.

So that’s me. I’ll write a post on how I manage symptoms as a lone person on bad days soon. When I feel a bit better and I have more energy.

So….in about another year then? 🤣. TTFN 

Crafting and Other (Long Covid) Updates

 Seeing as I FINALLY got down and cut out my knickerbockers, following a MacGyvering of two Simplicity patterns, I thought I’d drop in a post to update on various crafting shenanigans. 

As I can’t remember (read: didn’t bother to check the last post), over the last few weeks, I’ve finished my trans inclusive pride flag blanket replacement, knitted (frogged and re knitted) a rainbow dog jumper for a neighbour (from blanket leftovers), a cardigan in black, red and grey for my GP’s new baby (also from said leftover yarn) and started both a Sirdar jumper in Jewelspun (which I thought had wool in it, which will teach me to check properly) and my first pair of socks of the season in Cascade heritage solid and print. Why both? Because this tunic sweater is the biggest garment project I’ve knitted, I know it’s sometimes a good plan to knit something smaller, so you finish things. I set myself at least ten rows of the tunic sweater every day to knit, which is probably about 5cm. I also like knitting small things. Especially socks. I do have a sock yarn problem, so it’s probably good I’m keen on knitting them, huh? 

In terms of socks, I am aiming this year to get at least a pair finished by the end of the month and the Cascade Heritage print is possibly the thinnest yarn I’ve ever knitted with, but it’s incredibly soft. The colours reminded me of the Hocus Pocus witches, just in a more pastel colourway, without being actually pastel. I’m using a sage solid for the rib, heel and toe and it looks lovely. Given this is how what I like to do, I’ll almost certainly get a second pair out of this yarn (like I did with my Christmas socks for myself last year - someone was most pleased to get a pair of socks big enough for their feet!). The pattern I’m using is the one I knitted up in a lovely, now discontinued, cashmere sock wool by Debbie Bliss and, I regret to say, I fiddled with the pattern, resulting in a pair of socks just a smidge too small for me, so they were also passed along to a grateful recipient. Hand knit cashmere socks, with a lace stripe down each sock! She was pleased, but so am I to be finally able to knit my own pair!

I weakened and bought some Opal sock yarn yesterday in a 6ply, which I’m either going to knit slipper socks out of or just some socks. I’ve got some excellent patterns for thicker socks, so I’m looking forwards to using up the lovely pure wool I used to knit the greyhound jumpers over the summer, along with some slipper soles from Regia and Bergere De France - yes, I do want some new slipper socks.

I had a LOT of sock yarn leftover from last year in some prints and block solids and I then decided to buy yet more sock yarn - as of today, four of the six balls have arrived from Lovecrafts and Hobbii (though one colour way IS going to almost match my tunic sweater when it’s finished, so…). Look, I have a problem. A sock yarn problem. I know I do. But I’ve got patterns and a determination to not buy any more now. Promise. 

As I’m now not well enough to work, I am enjoying knitting and pottering. I’m slowly managing to sort through things a little at a time and I know that once I finish the sitting room I’ll feel much better, same with the kitchen. I recently was gifted an air fryer, which I’m very excited about.

Now, if you’ll excuse me, these socks aren’t going to knit themselves, nor is the tunic sweater. Sewing needs to wait for another day…

In terms of Long Covid, things are much the same; waiting for appointments, having others, waiting to hear about decisions on benefits, though I am now in the Support Group for ESA, which means they think I’m not well enough. Just another two and the pension to go. Knowing I’m relatively financially secure will make a big difference to my anxiety levels. However I am still facing selling my home. Sigh. 

Do take care.

Yikes. It’s been a while

 I ended up not updating the blog this year for a number of reasons:

1) The Keyworker Petition Campaign took off in a BIG way, leading to over a hundred thousand supporters on the Change platform. It was handed into 10 Downing Street in March, but the London trip took so much out of me I’ve been in a relapse ever since, though up until August, I was involved in a number of other long Covid projects, with Long Covid Scotland, as well as the Scottish Healthcare Workers’ Coalition, who are a core participant of the Scottish Covid Inquiry. Confidentiality reasons mean I can’t say too much about that, but I can tell you that there is now a survey (which I originally drafted) for any health or social care worker to complete, with or without Long Covid. I was advised I was near burnout and had to stop 95% of advocacy. I’m hoping to get back in the saddle, but that’s dependent on a number of other things getting done first.

2) I finally lost my job in August. Medical termination. I knew it was coming, but it’s still been a shock. I also came off the U.K. nursing register at the end of the same month, so I’m no longer a registered nurse. I’ve only been qualified 12 years, so it’s been a very nasty and frustrating shock to the system and something that is entirely down to my Covid infection in 2020 and the lack of proper support and care since.

3) I am currently trying to sort out my home, as it’s looking very much likely that I will have to sell. I am, at least, on the council housing register, but the chance of staying in this area is remote. The best case scenario for me is that I can stay put until I qualify for sheltered housing and see if I can’t move back to the area I grew up in - which is still close to where I am now and there’s a good chance my GP practice would let me stay with them (and it’s on a direct bus route to them). However, when you’ve got relapsing and remitting symptoms on the daily, with severe PEM and PESE, trying to clear said home is extremely difficult. However I have now gone through about 80% of my books and a van load of things recently went off to charity shops. I’m also going through my shoes, accessories and bags etc, as well as clothing, again to try and slim that down. The final load will be ready to go to charity or sale in the Spring, whether I’m still here or not. I’ve also identified furniture I am going to let go as well. I suspect that once I’ve completely gone through all my cupboards and lockup, all that is gone and everything is more manageable I will feel a lot better. It’s just chaotic at the moment, which I absolutely hate, but there’s not much I can do about it and it all has to be done very, very slowly, lest I end up in bed for days on end. 

4) Shenigans with local health providers continues: One appointment got pushed back nearly four months, due to their closing the local testing clinic without warning and the next closest didn’t have any appointments for another 10 weeks. Then, as I cannot get equipment back to another clinic within 24 hours, they’ve cancelled those appointments and put me back on the waiting list for an inpatient appointment and that’s got an 18 month waiting list, less the four months I’ve been on it. Still no word about the exception for a medication. And then there was the farce over my flu vaccination. The Costumeer is VERY displeased with all this and no, I do not take this passively: A complaint has been put in about the horror show that is my nearest mass vaccination clinic. My MSP is also involved. 

5) I am still crafting when I feel able. I recently finished two greyhound jumpers and am now working on a replacement blanket for myself - it’s called a memory blanket (but the Hue Afghan by Knit Picks is very similar) - that has a cunning method meaning you can make this as small or big as you like and each square of it is constructed by partially or entirely picking up stitches from what you have already knitted - this means less sewing up (ie exertion) and I’m also making good use of another technique that means you partially incorporate loose ends as you’re knitting so there shouldn’t be too much of that either. I’m getting through anywhere between 3 and 6 squares a day. I managed to weaken this morning and buy more yarn and a pattern for a sweater I saw. It’s a bit more of a challenge as it’s a jumper for me, longer length and a chevron-style patterns, meaning you are increasing and decreasing on the same rows. I shall be using lots and lots of stitch markers! I’ve also promised some more dog jumpers to friends, but in most cases we are waiting as they’re mostly puppies or I need to see how much yarn is left from projects I’ve just completed or am working on. As the squares of this blanket are a bit smaller than I wanted, I’ve got to decide on how I’m going to make it a bit bigger before I use my grey yarn to knit the borders, but given the yardage used so far and what I’ve got left, I don’t think this is going to be an issue. Plus, once the main section is completed, it’s a case of dividing each colour left in half by weight, so equal amounts go on top and bottom edges. I was going to do smaller squares in the same method, but by the point I’m done with this main 11 or 12 x 11 stripe sequence, I think I’ll be over it and just want some stripes! I’m hoping that my 80cm circular needle will work for this, but I’m resigned to possibly purchasing a much longer one if needs be. I’ve got plans to cut out and sew up three or four garments - as two (or three, if I do two colourways of the knickerbockers) are autumn/fall style, but I’ve really got to adjust the pattern (I am MacGyvering my own from two - basically I’m altering the leg to that of another one and it’s not gone well. I may end up with the black ones, rather than the wool check, as the former fabric is cheaper so I won’t be too upset if it doesn’t go completely to plan). I’ve also drafted an 18th century short cloak and I’ve got the fabric for that, plus lining for the hood and some cheap metal closures. I’m not yet sure if I will be able to get away with leaving the edges unbound, but if the cloth is as lightly fulled as I think it is, it means it’s not a woven that will fray, so, as per historical ones, I can leave it. My replacement Star Wars dress or possibly trousers I am leaving till next year - the other one was given to my Aussie pal as it’s too big for me but fit her perfectly, but I bought replacement fabric. I keep searching for inexpensive, lightly fulled broadcloth wool mix fabric to make another long cloak out of, as mine is a bit too heavy a weight to drape properly, but I still haven’t seen any in a colour I want. The short cloak I intend to make non-costume use out of. Eventually I hope to trim it in Ribbon, fyi, but I don’t know when. If I do have to bind the edges, I’m just going to use plain old bias and I’ve got two colours to pick from. But it will probably be black. As most of you know, I tend to start knitting socks when the weather turns - I’ve got plenty of sock yarn to use! I’ve also got a lot of worsted/aran left from the dog jumper projects, so I will be knitting up a pair of slippers for myself, probably using two strands to achieve a chunky weight. I’ve got a pair of slipper soles, but my source recently closed down, though Bergere De France also do two types. 

6) Financials. I’m expecting to get 12 weeks redundancy plus my AL and they said that works out to a similar length of time. If I get it in one payment, unfortunately that’ll be taxed silly. I’ll get back the tax at the end of the year, but by that point I’ll just be out of the non-contributory stage of Employment Support Allowance, so whatever I get from tax back will be taken off my contributory based benefits. I am still waiting to hear about which group I’m supposed to be in, as there’s not only a different level of support, but also activities to engage with, though I will appeal if they consider me able to do some work at the moment as I can’t leave the house most of the time, let alone get through most days without a long rest and nap. I haven’t heard about Industrial Injuries Disablement Benefit - which I wasn’t expecting to get - so I’m calling that agency on Monday to find out what’s going on. In terms of the Scottish benefits agency, I found out two weeks ago that despite having my paperwork for nearly four months, they haven’t even got to the point of assessing my change form (and knowing my luck, they won’t have got to it by January when my current award expires, meaning that I’ll end up completing two change forms, essentially). I have been warned it’s taking more than eight months for these things to be sorted out (worse than when it was being handled by the U.K. agency, which is widely regarded as awful), which is extremely stressful to hear when you’ve lost your job and need to know what your income is likely to look like going forwards. I don’t know if the Pensions Agency have received my paperwork, but they’re also taking at least six months or more to decide if they will or will not award you early retirement, with mine not being worth much as I’ve only been working 12 years as a nurse. As for my legal case, there’s no word yet. I do have to forward on some information I got via my MSP, as it’s pertinent - not least the level of ableism displayed towards most people with chronic conditions in respect of management risk assessments. But I’ll need to look at the Covid age thing again, as there’s a very pertinent line in there about managers taking into account local prevalence of virus when deciding on non-shielding staff. 

I try to remain optimistic, even though I now need a wheelchair and I’m waiting for that appointment. Today has been a high pain day and I’m reminded of the levels of recycling that need done. I also need to get to the local grocery store. I’m also thinking of vlogging and learning how to edit. 

Friends, I hope you’re well. Should I remember, I will be posting some advice/shortcuts/things I use for bad days. 

If I remember… 

Life on Hold. Again. And Again. And Again.

 I think the absolute worst thing about living with Long Covid is the fact that it is so unpredictable and that you cannot catch a break; I distrust the days where I feel I have energy. This is because even if I pace myself well, chances are I am cruising for a crash. I don’t know why. I probably should have put off an impromptu visit yesterday, given I had a LOOOONG set of MRI scans on Monday, but hey ho, it is what it is.

This means progress on that short cloak and re-patterning the regency short stays (even fan-lacing the new ones) has halted, as has the rejig of the petticoat, as well as the ongoing plan for a new regency dress (that’s more 1790s-1805 in design. Sort of). 

I have done a LOT of knitting though. I’ve finished two cardigans for cousins’s babies (cursing the fact there’s now ANOTHER one in the same family line. Not really, but I feel I must knit), knitted up a sweater which, despite my following instructions, does NOT look like it will fit a 9 y.o. - which led to the rushed buying of some expensive wool (in the sale!) to knit up a pair of FANTASTIC fox socks, complete with ears and bad embroidery for said 9 y.o. This meant that I could finally get on and knit myself a pair of winter thick socks ahead of the impending sad event that is the disposal of my entire sock wardrobe due to the sodding fungal nail infection that took hold following Covid. Oh yes. Everything’s gotta go and I get to disinfect my shoes every time as well. New slippers, everything. I also completed a pair of leggings for myself, forgetting my rule of using a smaller set of needles to handle my crap tension, so I may undo the top and reknit several rows with a) double rib and b) needles at least two sizes smaller. They’re being held up with two garters made of very cheap elastic and it’s now a long term plan to design my own pair and I have IDEAS. 

So this morning I won’t be doing my singing thing, as that leaves me tired and I also need to do SOMETHING with our Change petition, which is a campaign for key workers who caught covid, developing Long Covid (as a result of their jobs) get compensation. The recent news release of the IIAC makes it really hard for people to actually get Industrial Injury Benefit, unfortunately, plus a lot of us are getting turned down for pensions too. 

I am trying not to despair. I’m looking at the towel I want to get finished that’s been sat on a needle for two years. I’m planning to do the 13 row pattern repeat, one block a day. If I’m lucky, this means it will be finished next week. 

So, couple of phone calls to make, explaining I can’t accommodate either the costs or impact of travel and can we please do either video or more local appointments, pretty please, with cherries on top. 

Sigh. 

Peace, out.

PS I cannot add photos, due to there not being enough disk space. Sorry and I’ll try and post the, on the blog later on. 

Long Covid - What Else Is New?

 Today I wish I was writing a happier or more constructive post. This isn’t it. 

I had a check in with my boss, who’s just back at work after THE VIRUS. Funnily enough, they’re not feeling right. I advised Berocca, pacing and lots of rest. Not overdoing it.

Anyhoo, I explained how the referral to neurology went awry for some reason, so I’m not where I should be on the waiting list. Also explained how my unreliable meat-sack now has cysts where I don’t want them. And my immune system is so shot to pieces I have a nasty fungal nail infection, with bonus gammy toe issue (goodbye £50 for private podiatry because 18 months after referral to the NHS podiatry for a different foot problem, I STILL don’t have an appointment). Then there’s the obvious cognitive problems after just a couple of hours of doing anything. And the fact I can’t stand up for more than 10 minutes (I am in an office job, but still). The clinical trial I am in - the only one I found that I qualify for - is lifestyle intervention and I feel much more fatigued on it. That could also be the medication for the fungal infection. 

I don’t know what to do. I keep taking my supplements and, to be honest, I’m going to start with low res exercise, even tho everyone has told me not to. At the current time, I just can’t see myself ever getting back to work full time as a nurse. I see myself losing my job and therefore my home in a matter of months. This fear and stress is ever-present and it is NOT doing me any good. 

While I can’t talk about it, this feeling of having my back to the wall did prompt me, following some counselling, to deal with my anger around how I got infected more constructively and, with my union’s assistance, I’m now looking into it. I cannot say more than that. I literally feel like it’s similar to Luke Skywalker being the Last Hope for the Galaxy. 

I am going to be constructive, speaking to friends about what else we can do to raise awareness of the situation Key Workers are in: Governments utterly failed us during the pandemic, putting many of us at unacceptable risk. Now they look like they’re ignoring us, hoping we go away and many are finding themselves facing the ableist attitude of “If you can’t keep up with everyone else, then out the door you go”. 

I’ll keep you as posted as I can about the things I can, but rest assured that the brain fog is back, plus the tachycardia and fatigue, as well as interrupted sleep never ends. 

Travel with Disability or Chronic Illness - addendum

 Doing the podcast today with Julie Taylor (you can find it on Spotify, Amazon, Apple, buzzsprout, Google - Living With Long Covid - Julie Taylor), I realised I had not added some pro tips in relation to things you can take with you that make a HUGE difference. 

1) A dark (think black) umbrella. Useful for rain and even more useful as an impromptu parasol as it gives you INSTANT shade. 

2) If you’re bothered by pressure changes on aircraft, get some specialist earplugs, from a brand like Earplanes - not sponsored. There’s a few different kinds and sizes. A quick search on Amazon or Google will bring some up. Trust me when I say they’re worth every penny. 

3) Deongestants also help with comfort, but ask a pharmacist. These can make the difference, especially if you caught a cold, between pain (and almost screaming due to the pressure changes) and bursting an eardrum (yes, it’s happened) or close to it

4) Good flight socks. I LOVE TRTL - again, not sponsored. 

5) a foot hammock. Really. Look these up on Amazon. You want one that’s going to stay flat. They hook over the tray table and can be adjusted, helping you relax on a flight. 

6) Noise cancelling headphones or earbuds. The earbuds take up less space and can be used on a flight. I’ve used both Flare and Loop. Again not sponsored, but I LOVE the latter for comfort. There’s usually some for sleep and noise cancelling, so think about what you like. 

Those are pretty much my pro tips for things to consider taking with you, but if you’re thinking medication, ALWAYS seek advice from your GP or pharmacist ESPECIALLY if you take regular medication. 

I’m planning a check list for things to remember to do before traveling, which will be announced here and also on my Ko-Fi me when it’s done. I also have a new Facebook page - Perfectly Imperfect - my new space for advocacy. 

Stays, Completed!

 I’m going to admit here that there were not a lot of pictures taken, as I got distracted while finishing up my stays. I also learned two things when they were done: 1) Lacing on your own with Long Covid is exhausting and 2) I probably should have made them a little shorter. Still, that’s for next time, when I make some overall changes and create a new pattern. I’m very glad I made the changes I did and as you can see in the photos, they worked REALLY well.

I have not been particularly well over the last couple of weeks, as a cold completely floored me and I also have a gammy toe. This is being seen to by professionals later this week. I’ve also got a few appointments, a podcast recording and so on. 

Anyway… As predicted, I had measured too long on the stays, which is OK as I plan to use these on the next variant. I also found and ordered a narrower custom busk, which HAS added to the cost. I am still dithering over ordering the Red Threaded regency stays pattern and also self patterning up a more transitional set. I finally downloaded the Black Snail spencer pattern and am eyeing up my navy cotton sateen dodgy pillowcases as potential fabric stash. What? You make do with what you’ve got. I was planning on sending the whole king size duvet set, plus four pillowcases and the flat sheet to the charity shop anyway, so I might as well use it for costuming and wardrobe projects instead. With all the seam unpicking finally done, I will also be able to get on with my new dress project, which I think will take a bit of pattern adjustment and mock-up for the front at least. Plus I really have to deal with my shoulder issues. They’re NARROW. I also took some measurements over my regency stays and, as I couldn’t resist prancing around in it, my Regency P&P Lizzy Dress (coveted since 1995). I have even had both petticoats on to decide where to fix them up. 

I did put too many eyelets in I think, but on the plus side I suspect this means I might be able to do a variety of lacing styles, including spiral. The current plan is to cut long lengths of twill tape and convert it to fan lacing, to make it super easy to get in and out of. As a result, I re-laced the stays, using about half the eyelets and it’s now much easier to do myself, giving the same support. The Gravity Devices work very well, so I’m going to continue to use my original plan and secure them in place with at least one safety pin, as they could possibly fall out without something to hold them in place during activity. I learned THAT from the loss of both my Georgian/regency garters at the Fringe a few years ago. 

Anyway, without further ado, here’s the photo collection (which will be added to the usual gallery over on Pages). Enjoy, while I remind myself to take all my meds, supplements and neck another cup of coffee! The first pic is me properly dressed in all four layers - that petticoat really makes a difference when it comes to the bodice.

Travel With Chronic Illness or Disability

 A friend of mine with Long Covid recently went abroad on holiday and before she left, she and I had a chat about things she needed to consider before leaving. Julie runs her own podcast, so she and I are going to do an episode on this, because we both thought it might be helpful, but I did think it might be useful to jot down some notes, in case anyone wanted to look at them later. This advice is over and above any else, for example visas and the like. 

Being disabled or having a chronic illness does not mean you cannot travel. In fact, you’ll probably find that your GP recommends it, as getting away for a break does everyone good. That said, you will need to think about anything that sets off your conditions: For example, if you’re allergic to sunlight or heat/humidity triggers symptoms, you might need to think about where you’re going or at least how you’re going to manage it. 

Here follows some general advice about this - it’s broken down into separate sections: Before You Go, While You Are Travelling, While You Are There and After You’re Home. 

My first and most important point is that you absolutely MUST think about time to recover from your journey, both outward and return journeys. If you are working, I generally recommend starting and ending leave in the middle of the week, so that it’s not such a rude shock when you go back to work! You might also find that this is helpful in respect of slightly cheaper travel options too, but if you’ve got kids, this might not be possible. Also, especially if you have mobility issues, think about how accessible overall the place you’re going is. It’s no fun to discover your hotel has no elevator, for example, or a lot of stairs outside etc.

Before You Go

1) Book Special Assistance. Whether or not your condition is hidden or not, whether it’s intellectual or not, Assistance (walking or wheelchair) is exceptionally useful at the airport. Even if you do not use a wheelchair, remember that airports/stations are HUGE and it’s easy to get tired very quickly. You will be prioritised through passport control and security as well. Not having to stand in long lines is fantastic. A special note here is to organise this BEFORE you go: You might book your flight with one provider, but if they use partner airlines/companies, you will have to contact each company separately, for both outward and return journeys. Especially if you are changing planes. You can do this by sending one email with your flight(s)/train etc details to all the email addresses at once. The benefit of that is that each company should then know. The downside is one company might assume another is doing all the organising. I would recommend chasing each company up if you do not have proper confirmation of arrangements. NOTE: Special assistance usually requires you to arrive at the airport well ahead of time. Plan for this (and see my point about lounge access).

1a) If you have any dietary requirements, now is the time to speak to the airline. You may be able to access (but might have to pay for) pre-booked meals, which might be important if you have specific dietary requirements. Bear in mind your preferred meal might not be available on the flight. 

1b) Definitely think about where the loos are and leg room when you’re booking. It’s better to pay for a pre-assigned seat than get randomly assigned one that’s completely unsuitable. 

2) Contact the resort and/or any places of interest/theme parks etc before you go and ask them what arrangements are in place to support disabled or chronically ill people. Ask them what evidence they require. They will usually give you detailed information about the support they give. Some places may give discounted entry or free carer tickets, but this is likely to vary. In theme parks, on presentation of the correct evidence, you may find you get special access to rides and so on. They will normally give you instructions on what to do on arrival. Some theme parks also provide wheelchairs and other mobility aids for a deposit - check this out before arrival so you know what you might need to take and what you can leave behind. It’s also a good idea to check about general accessibility, eg how much is flat, what places are stair access and so on. 

3) Check the entry requirements of any country you are entering. This is especially important if you are on medication as many countries have strict restrictions on what you can take with you. Most will allow you to bring in what you need for your trip, but no more. Some countries will not allow some medications under any circumstances. Check first. The country’s embassy website is normally the first place to check, but if you cannot find the info you’re looking for, it is important to email them and ask. You don’t have to give a medical history, but if you’re on anything like sedative or opiate medication, you should do this. It’s better to be honest about your medication. I’ve generally found that the most contentious medications are things like antidepressants, painkillers (especially opiates) and things like benzodiazepines. It’s better to be safe and list everything when asking for advice. You should ask for this information to be treated confidentially.

3a) Medication usually has to be carried in or with its original packaging. If it comes in blister packs in cardboard, my pro tip is to take what you need for the journey + one or two days and keep it alongside the flattened box. If it comes in a tub, I’d strongly suggest speaking to a pharmacist, as they might be able to sort you out smaller tubs etc for travel. Figuring out I could flatten the cardboard boxes has saved me SO MUCH SPACE in hand luggage! 

4) Gather your evidence in advance. You will most likely find that you’ll need some kind of evidence for airlines, train companies, resorts and the like. You will definitely need this for taking medication to many countries. In my experience, although there is a charge for this, the best thing is to get a letter from your GP. On it, ask for your conditions and medications you take to be listed. Bear in mind that there is usually a time frame travel companies, resorts etc will accept, even if it’s just for conditions, so make sure you are aware of that. Some countries will ALSO require you to have a prescription with you, detailing the drugs, but your GP should be able to issue this (note: this isn’t normally the bit with what repeats you are on. It’s the full, two page thing you’d normally take to the pharmacy). I would always keep this safe and scan a copy of it. Yes, it’s likely to cost you, but this is part of the costs of being disabled. 

5) Get travel insurance and be honest when talking to the company. There’s lots out there and yes, it’s likely to cost you more. Depending on if you intend on travelling more than once in a year will determine whether or not a single or multiple trip policy is more cost effective or not. It is VERY important to be completely honest with the company as they are likely to refuse to pay out for something that happens that you’ve not told them about beforehand, barring accidents (and the accident would have to not be related to a pre-existing condition). I always go for the best cover possible. 

6) Considerations for while you are travelling include distance to the departure point - station/airport, time of departure and how long you will be waiting in the airport, as well as what facilities there are there. If you have a ridiculously early flight, rest is important, so staying the night in a hotel or similar IS something to think about, so you’ve got as much rest as possible. If you’re going to be spending a lot of time in the airport/station and don’t have lounge access as part of your ticket price, I would definitely recommend treating yourself, as there’s usually lots of perks, sometimes including showers, drinks etc. this will depend on whether or not there’s a pandemic on though! Be as rested and comfortable as you can.

7) Other things you want to think about are things like earplugs that help with pressurisation for flying, noise cancelling headphones, decent flight socks and if your GP recommends you take any medication to help prevent DVTs etc. if you are travelling economy, you might want to look into something called a “foot hammock”, which you can hook over a tray table and rest your feet on. 

8) Accommodation and Transfers: It is generally a good idea to ask ahead at the time of booking (and follow up) about rooms that suit your needs and any aids you might need. I’ve landed up in a quiet room which requires too much walking to and from. Not fun. Many hotels will also be able to provide some aids or properly accessible rooms. Sorting it out before you go saves headaches (and gives you some clout if things go wrong). I definitely recommend booking any possible transfers between stations/airports and hotels in advance. Check what instructions you need to follow to make sure transport shows up when it should! Another thing I have become a huge fan of is inclusive resorts or those where you can buy a meal plan of some kind. Again, if you’ve got dietary needs, contact the resort/hotel etc beforehand.

9) Mobility Aids - I am going to come right out and say this. Friends of mine who are wheelchair users have had a fairly awful time of it, whether it’s damage, loss or even airlines using their aids for other people. You can buy specialist cases to try and mitigate this, but they’re pricy. I’m lucky enough to be able to get away with a stick, so I carry a folding one. You can even buy folding crutches. I mind less about airlines taking my crutches from me when I board an aircraft to store - they’re pretty robust. I also tend to travel to places where I will be staying with friends, so the likelihood of my being able to access a “borrowed” rollator is much higher (it’s already in place for a forthcoming trip to Portland in the next year), although mine does actually fold right down and can go in one of my duffel bags. 

While You Are Travelling

1) Always put your medication in your hand luggage. All of it. Keep it with any paperwork (see above) you need. Another aspect of travelling on meds is that you usually have to have the medication in its normal container. My pro tip is to take only what you need and then flatten the packaging (if possible). This works fine if you’ve got blister packs, not so much with tubs. See above. Make a note of any time difference adjustments you will need to make. 

2) Keep well hydrated. Avoid fizzy drinks if you’re flying. 

3) have some sweets to hand. I like the hard kind and don’t leave home without ginger candy of some kind, but that’s because it’s good for flying and nausea. 

4) Dress comfortably, especially shoes and carry a large enough scarf or shawl that covers your top half. They take up little space and are useful on long flights. Even relatively lightweight. A pashmina type works very well. 

5) Let your crew attendants know about any help you might need. They will be aware you’re on board. This will also prove useful at your destination, when you’re waiting for special assistance. If you find you are having any issues, especially with unsympathetic special assistance (oh yeah, that’s happened to me), the crew can be amazing. There is a reason I always buy something for flight attendants if I’m going on a long haul flight - it’s because one Irish airline were amazingly supportive after I was let down badly by Special Assistance at my destination one time. 

6) Be prepared; for delays, for boredom. My minimum in my hand luggage is always a wipe for my face, moisturiser, toothbrush and toothpaste, lip balm, comb and deodorant. Plus spare (under)pants and socks. I don’t travel without my iPad, phone and charger and the relevant travel plug etc. plus notepad and pen and medication, obvs. If you need things like a stick for mobility consider packing a folding one. Also consider weather - if it’s going to be outrageously hot or wet at your destination, be prepared. I definitely recommend a black or dark coloured umbrella (useful in rain, doubles as a parasol). 

While You Are There

1) Try and make a plan for what you want to do and definitely look into planned excursions, just be careful what they involve. I enjoy city tours on buses, as I don’t have to walk, get to see lots and if I do have the energy, can choose to get on and off some to go into museums etc. Going to a theme park? See my point in Before You Go. 

2) Don’t forget to rest. On one trip to Turkey, because my sleep was completely awry, I was usually up with the larks but then would have a good nap late morning and early evening, if I didn’t have any particular plans. I also, on medical advice, spent a lot more time reading and resting by the pool than I ever have before. 

3) Take into account any possible time difference. Check out advice on how to manage this online. Depending on the direction of travel will affect you on different legs. I live in the U.K. and if I’m travelling to the US etc, I’m usually fine on the outward leg and not so good on the return leg. If I’m adding hours, ie heading to Turkey etc, I’m usually not good on the outward leg, better on the return. That said, as I absolutely cannot be up after midnight anymore, this makes things more complicated. 

4) Don’t plan to do anything the first day. At least. Use this to recover from your journey. If you are planning on doing anything, make sure it’s relatively close to your accommodation. 

5) If you are unlucky enough to need some kind of medical support while away, be sure to call your insurance company first and ask for their assistance. Trust me when I say that it’s not like simply calling an ambulance or even showing up at any hospital overseas. I worked in Spain and having to make this point to my customers - they they needed to call their insurance line unless it was literally life or death (in which case, call an ambulance) or face excess costs. If you attend the wrong doctor or the wrong hospital, you might be left liable for full costs. It is always worth checking the small print on your policy before you leave. The policy will also detail what they will pay for direct and what you might have to pay for and claim back (or not).

Obviously, your return journey is the same as before, but I ALWAYS suggest a call or email to the airline etc about special assistance for the return leg. 

After You’re Home

1) Make sure you’ve allowed yourself enough time to recover. You’ll know yourself best and it’s a good idea to factor this into your annual leave, if you’re working. If a time difference is involved, a couple of days minimum is going to be needed. 

2) Rest, rest, rest and try and get your sleep back to normal as soon as possible. 

3) Hydrate

4) if you feel it’s warranted, say thanks to people who supported you. Honestly, people do like feedback. If something went wrong, provide feedback. Positive Feedback is actually useful to people’s employment files. Like I’ve said before, one Irish airline was so amazing I’ve used them ever since for long haul to specific places and I always email them if someone went above and beyond, as well as take a little something for the crew & attendants on each flight. 

5) Check what plans you have once home and adjust them as needed. Listen to your body. 

Unfortunate Downsides

There is no point in denying this: Friends of mine with disabilities etc have had a horrible time when travelling. For the most part it’s arranged special assistance that has not been in place where and when it needs to be. I have had a horrible time of it myself, being treated appallingly at Dulles in Washington on arrival after a long flight and refusal to provide me with the assistance I needed. I also know friends who have had mobility aids damaged. It is something that you need to keep in mind. Vastly unfair, but the world is not particularly accessible.  You can travel, but you need to put the energy into planning with military precision and also accepting, if you have a fluctuating condition, that you might have to change plans at short notice and that this might cause problems, such as if you have tickets and can’t change them. But go! 

Special mention to Aer Lingus, whose flight crew found me sobbing in arrivals after I was denied special assistance in Dulles on the grounds I could walk. They walked me through to baggage and post-arrival security and made a formal complaint about everyone who had been absolutely awful to an autistic person. This is why I tend to fly with them and always take something for the crew. These days, I can’t actually walk far, so it’s wheelchair assistance or I don’t go. 

I hope that’s been a long, but useful, blog post on travelling with a disability or chronic illness. It’s based on my own and others’ experiences. 

PS Forthcoming post about the finishing of my regency stays! 

The Trouble with Gussets

 Show me a historical costumer who likes doing gussets and I’ll outright accuse them of lying: I woke this morning, with sense of purpose in relation to the stays. After a sustaining breakfast of porridge (what, I’m Scottish?), I set to purpose with my nemeses. 

The first thing I did was ensure that my two layers were firmly basted to each other - around the top edges, the mid seam and also either in the middle of the gussets or around 5/8 to 1 inch from the fabric edges. Then I set to sandwiching the actual gussets between the layers. Trust me when I say this is NO FUN. 

Side note: with this pattern I have a curving seam horizontally across the pattern. It does help it fit nicely and comes from the Daffodowndilly pattern, on which these are mostly based. If you use this kind of pattern or have a horizontal mid seam, for the love of chocolate, please make sure you trim down the seam allowance pointing up towards the gussets openings. If you don’t, you risk playing about with scissors trying to trim said seam allowance as it pokes up between the gussets. Another suggestion is to tack the triangle bit of the gusset seam to the upturned and pressed horizontal seam to each other (before basting each side of the stays together), so that when you start sandwiching in gussets, everything stays flat. Obviously, this occurred because my gusset slits have to be cut as low as they are, otherwise it wouldn’t have been an issue.

You have to make sure that the seam allowance (1/4 in) is the same on each of the main body edges AND the gussets. Too much and the gussets will be too small (and look wonky). With the fabric edges of the main body, get them wrong and you could end up not securing all layers with stitching. This will result in lots of tears, swearing and redoing. While pinning all this together, you have to go slowly, using lots of pins and essentially do this 3D if you’ve got curved edges to your gussets, to make sure that sandwich hem is approx 1/4 in all the way round. Thankfully, I left just enough space with the basting to be able to check this fairly well. But you have to both pin and think in 3D terms, which is quite difficult, while ensuring the seams are mostly the same, so it won’t wonk up when sewing. You also need to make sure all the edges are properly folded in, so you can’t see any raw edges. 

Now an experienced sewer would tell you to do something entirely sensible at this point, which would be to take a different colour of basting thread, carefully baste all these layers together and then remove most, if not all, of your original SEAM basting (note: not the gussets piece basting, unless it’s hidden by the overlapping edges of the main body piece. I am not that sewer and I tend to get impatient. This is even knowing that by not doing that, I risk (and succeeded with) leaving little bits of visible tacking when I then go to remove the basting. I would also encourage everyone to please tack down the bottom triangle bit of the gussets with thread the same colour as your fabric, so that if you struggle to get it out later, it’s not really going to show. 

Another side note: Sandwiching in the gussets invariably will not go well, resulting in lots of repeated pinning until the gussets are all in sort of the right place, matching at each side, if that makes any sense. If you don’t finagle them properly, you risk the cups being different sizes, hence the attention to detail required when matching all the seams. Also, if you cut your gussets correctly, you will have a bit of surplus fabric extending over the top of the main body part. This it totally fine and you can trim it down afterwards - just make sure that the excess matches on each side of the stays. 

Anyway, at this point I decided I was absolutely not going to stress myself out hand-sewing the gussets in place, as originally planned, mainly because it would lead to even more swearing, tears, blood everywhere and so on (any hand sewing on a project and there’s a lot of spitting - as the enzyme in your spit breaks down blood, reducing permanent staining. Top tip). So, off to the sewing machine I went. 

For the most part, this has gone fairly well, with most of the seams being pretty good. I had to rip out the start of one, when the underside layer decided to wrinkle up and also discovered the same once I was done (but I hand-sewed the correction to that, with blood, swearing and tears). I then overcast the bottoms of the gussets (poorly) and set to pulling out the basting stitches. It’s at this point I have regrets over the colour of the basting thread, but I reassure myself that nobody is going to see them unless I want them to and it will all probably come out with time or a magnifying glass, patience and a set of tweezers. Another tip of mine here is to consider sewing each side of each gusset from top to bottom, rather than trying to constantly turn the fabric. This saves time, promotes accuracy and then you probably should do a few rows of reinforcing stitching across the bottom of each gusset. 

Note: I was correct in that I still absolutely hate hand sewing through multiple layers of fabric, trying to keep seams together.

So - thoughts: Would it have been simpler to stitch in single gusset layers to each side then sandwich together with the boning channels and at the sides of the gussets? Probably, but doing it in one halved the time I spent and I managed to do OK, with minimal correcting. I would definitely say that it is easier to treat each fabric layer individually, but my previous experience has resulted in a degree of wonkiness when then matching up the gussets and stitching those layers together. That said, that stitching is only ever two layers of fabric.

Award to my sewing machine for taking 6 layers of some random drill fabric and stitching it all together. 

I have now pinned the side backs to one layer of the thing and while I am tempted to keep on at this today, I also know that I shouldn’t do these kinds of tasks for more than a couple of hours at a time. Plus, I need to eat my lunch, which I forgot as long Covid left me without appetite stimulus. 

I am still stuck on what to do about the straps, but I think I have the idea of how to do it in my head and in regards to attaching them and the twill. 

The next part of this will be stitching on each side back and then marking (and sewing) all the boning channels. I checked the back seam ones and realised that the ones I bought are a tiny bit too long, so I’ve just bought four, slightly smaller ones and am now waiting for them. Unfortunately, the seller is on annual leave this week so I won’t have them sent out till next Friday, but as I still need to do quite a bit of work on the rest, I’m not overly concerned about this, as I’ve lots more I can work on. The bones are also not wasted: I’m sure I can use them for another project (I might even be able to use them on this one, but that depends on overall comfort and placing). 

Have a great week, everyone. Here are some photos, posted, by chance of the internet gods, in no particular order. I tried, honest.

Another Depressing Week in the Life of Long Covid

 It’s been a while. Again. Unfortunately, when you’ve got Long Covid, you have to balance up everything and the energy cost of it. A combination of visits, appointments, plus relapse and ongoing meetings, as well as having to rapidly respond to the release of new guidance last week means the blog has had to take a back seat. 

We all discovered, those of us in healthcare with Long Covid, that our special leave - as in full pay, not counted as sick leave - is now coming to an end. For some, it’s been sooner rather than later. As you can imagine, for those of us on our own, this has been a worrying, stressful week, not least because there continues to be silence on the issue of occupational disease compensation and pension, as well as pensions. To say many of us feel like we are being thrown out like rubbish is probably an understatement. 

This week, I was also signed off by physio; not because I’m fit and well again, but because there is nothing they can do for me. I cannot participate in their programmes because I am not well enough. After two years. They also admitted their rehab is based around graded exercise therapy - which is not warranted as I am now suspected to have ME as a result of Covid. 

On top of that, there was another seizure. Which is very, very alarming. And I also have a large cyst which may require surgery if it does not go away on its own. 

I read horrifying stuff today - two individuals who have been moved to more advanced sickness procedures IN SPITE of the fact that existing guidance says not to do this AND that the new guidance says to set as if for day one the first day after existing guidance ends. I have given the best advice I can - which is that this is not correct and to contact union or legal representation as soon as possible. After two years, guidance on an extended phased return is being ignored, despite industry stating this is best practice. 

I am left wondering: Is this discrimination rearing its ugly head?

My experience of working in healthcare has often not been a happy one and that’s certainly the case over the last ten years. I moved from a post where my training was going to be advanced quickly, with excellent promotion and career prospects to one where I was bullied, harassed and discriminated against for having chronic conditions and other protected characteristics. It has left me believing that my colleagues are fundamentally ableist or at least demonstrate significant unconscious bias when it comes to their understanding of what disability means. There’s certainly a massive disconnect when it comes to their beliefs about conditions. 

My fears around discrimination, from what I hear from others, is coming true. Colleagues across the U.K. experience disbelief and hostility from colleagues over their ongoing symptoms, with those individuals ignoring the basic tenet of what we were taught - which is that patient experience is individual. The stress of this, of worrying about posts, being expected to “keep up” is causing relapses all over the place. Some have been sacked, others pressured to resign. 

I do not know what is next for me. I suspect it involves longer discussions with my rep, my union, lawyers. I know it involves continuing to make sure the voices of those in my profession and others with long Covid are heard. It means speaking to a lot more media, more politicians. I would like to see myself continuing in a work role, but I do not know what that will look like. That, on its own, is scary. 

In the meantime, I will have to fight to retain my salary for at least the next nine months. I can perhaps pay my mortgage for three months beyond that, if I am lucky. I may have to get in a tenant, which I am reluctant to do, because of the risk of catching Covid again. Plus, being disabled, it’s not often the best option either. And I’m not tidy at all. 

So is what’s going on discrimination? Yes. Absolutely. We, the tired, sick ones who are being deliberately ignored by people in power are suffering AGAIN. All we did was do our jobs. Many of us should not have been going in to work. Instead of wasting huge sums of money on faulty PPE, consultations on image and failed T&T, these individuals could have created a fund to ensure we were not financially destroyed, that our homes were safe, our debts paid off with full pensions. 

I continue  to scream into the social media void and hope someone, somewhere will listen. But a Lottery jackpot win would also improve things considerably.