My Chronic Pain and Chronic Illness Christmas Survival Guide

Christmas is the most wonderful time of the year, but for those of who are living with chronic pain and / or chronic illness, it can also be the most exhausting, overwhelming, and frustrating. We not only have our usual daily hurdles to contend with, but suddenly we have halls to deck, presents to buy and wrap, pressure to attend social gatherings and parties, a feast to cook, and a million other tasks that require far more spoons than we have to spare, and can inflict a great deal of pain, fatigue, and stress on us. It's exhausting just thinking about it.

This is my fifth Christmas with chronic pain and chronic illness. That first Christmas was a disaster; I hardly managed to enjoy any of the festivities, and could only tolerate an hour or two out of bed on Christmas Day, which was really upsetting to me at the time because Christmas has always been my favourite time of year, and I missed out on so many of the festivities I longed to do. Thankfully, since then, I've ironed out the kinks, and seem to cope a little better every year. Since that first year, I've learnt so many helpful tips for getting through Christmas, and getting the most out of the festive season with chronic pain and chronic illness, so I've decided to compile them all today in to one handy post for anybody who might be struggling to get through Christmas because of their health. If you are living with chronic pain or chronic illness and have been for some time, you've probably got coping with Christmas down to a fine art, but I know I would've found these tips helpful that first year when I was still finding my feet with chronic pain, and didn't know as much about it as I do now, so I wanted to share my tips in case I can help make one person's Christmas that little bit easier. I hope you find my chronic pain and chronic illness Christmas survival guide helpful!

1.  Write a To Do List and Prioritise
First, write a Christmas to-do-list, and prioritise what you need to do, have to do, and really want to do this Christmas. See to the important things first, and the least important goals last. That way, if you run out of spoons and can't complete them all, you can rest easy knowing at least some of the important stuff has been taken care of.

2. Give Yourself a Head Start
Ask yourself if there is anything you can complete ahead of time, to help take the pressure off and minimise the pain and strain in December. Tasks like Christmas shopping, wrapping presents, writing cards, and making your Christmas cake, for instance, could all be completed now, and as early in the year as you like for future Christmases.

3. Leave Some Tasks 'til  Later
To make December a little less hectic, ask yourself what can wait until after Christmas. Are there family and friends you can arrange to visit or meet up with after the holidays? Can you shop for and wrap their presents at a later date? Are there any non-essential appointments you can push back until the new year, when you're not so busy? If you can, put it off for a few weeks!

4. Stagger Your To Do List 
If you have a chronic illness, you'll know as well as I do that trying to do everything at once is pretty much impossible, and will rarely end well. You may find that staggering your to-do list over the festive season and only doing as much as you realistically can at a time before resting works a lot better. I personally find I achieve a lot more when I spread the work load out, because it takes less time to recover from each activity when I do a little at a time and don't over-do it.

5. Don't Push Yourself To Breaking Point
Listen to your body, and stop when you know you've reached your limit. It's tempting to power on through and deal with the consequences later, but ask yourself if the activity is really worth it, and is the aftermath likely to prevent you from doing something that's of more importance to you in the days that follow. Proceed accordingly.

6. Take Plenty Of Breaks
Give yourself as many breaks during, after, and in between activities as you need, and for as long as you need to. Yes, even if it means you have to stop in the middle of a task and come back to it later, or rest for twelve hours before cracking on with the next task. Pacing is key.

7. Pencil In Some Days Off
Keep as many days in your calendar completely free of plans as you need, so you can rest and recuperate from your Christmas plans, and deal with the heightened pain, fatigue, and discomfort they probably left you with. 

Ask For Help

8. Ask For and Accept Help
Don't be afraid to ask for help from family and friends, or accept help when it's offered. If you're struggling to power through Christmas activities or even your daily care, don't struggle on in silence because you're too proud, embarrassed or ashamed to ask for help; if you need assistance, let your loved ones help you! 

9. Assign Tasks To Others
If you're hosting a party, gathering, or Christmas dinner this year, assign tasks to people to lighten the load. Get somebody to peel the spuds, carry the heavy turkey, set the table, wash up... you don't need to do everything yourself- and shouldn't be expected to, either, chronic illness or no chronic illness.

10. Ask Guests To Bring A Dish To Dinner
If cooking and preparing food for Christmas dinner, gatherings, and parties is a challenge, ask your guests to each bring a dish of something to give you one less thing to make.

Shopping

11. Shop Online Instead Of In Store
Don't waste your energy Christmas shopping or doing a big Christmas food shop in store; avoid those long exhausting queues and back-breaking shopping bags, and do it all online from the comfort of your bed or sofa. Where else can you shop in your pyjamas at one in the morning?

12. Shop Early

If you must go Christmas shopping in store, go first thing in the morning and during the week when the shops are quieter. The queues will be shorter, the shop staff will usually be happier to help before they're rushed off their feet, you'll be more likely to find a vacant seat when you need to rest, and the whole shopping experience should be less exhausting and time-consuming before the crowds build up.

13. Make Use Of Gift Wrapping Services

When shopping for Christmas presents online or in store, make use of gift-wrapping options and services, if they're available. It might cost you a couple of quid, although sometimes it's free, but in return it could save you precious time and effort.

14. Take Advantage Of Assembly Services

If you buy presents that will need to be assembled by Christmas morning, get a strong pair of hands to help you, or take advantage of assembly services when you make a purchase. Many businesses offer them for a small fee, and they're worth every penny if they help make your Christmas that little bit easier. Failing that, a cordless drill-screwdriver will make assembling something yourself much easier and faster than with a manual screwdriver. (Trust me, I used to work in a vintage toy shop, and was forever putting rocking horses and pedal cars together; they make life so much easier!)

15. Ask Delivery Men To Leave Parcels In A Safe Place

If you will be doing a lot of online shopping, ask your postman and delivery men to leave any parcels in a secure place- in your porch, shed, over a locked garden gate etc.- so you don't have to get up to answer the door a million times. Most online shops will ask where they can leave your parcel when you enter your payment details, so remember to fill the box in on checkout.

16. Have Orders Sent Directly

Have your online orders sent directly to the recipient(s), so you don't have to fit in a trip to the post office and spend more money on postage to get presents to them.

17. Send Your Parcels Together

Send all parcels, cards, and letters at the post office in one go, instead of making multiple trips, and having to stand in line countless times.

18. Take Advantage of Pre-Prepared Foods At The Supermarket

If cooking and preparing food for Christmas dinners, gatherings, and parties is a challenge, take advantage of the pre-prepared foods at the supermarket. It may cost you a little more for the convenience, but you can buy meat and veg that are pre-chopped, ready-made pastry, pre-packaged party foods that you can just throw in the oven or quickly arrange on a plate, delicious desserts that taste as good or better than homemade, and all kinds of conveniently prepared foods that will help take the stress out of cooking, and reduce the amount of time you have to spend slaving in the kitchen. It's worth considering because it could save you hours of hard work and a whole lot of spoons that could be spent on more enjoyable festivities!

Medication

19. Take Stock Of Your Medication
Make sure you have enough medication stock piled to see you through the holidays. If you haven't and need to place an order with your doctor, dispensary, or pharmacy, do it now. The last thing you need is to be battling withdrawal symptoms over Christmas because you've accidentally ran out and the surgery / pharmacy is closed. 

20. Remember To Take Your Medication On Time
It's easy to get side-tracked when you're having fun with family and friends and your daily routine is a little different than usual, so set alarms on your phone to remind yourself when you're due each dose of medication. If I don't do this, you can guarantee I'll forget to take my meds until hours later when the pain has become so intense I feel like I'm going to pass out.

21. Keep Water And Medication In Your Bag
I'm sure this is an obvious one that you probably already do, but keep a bottle of water and more medication than you need in your bag so you're able to take your medication any time or place. You'll thank yourself for it if you get delayed, break down, or decide to change your plans on impulse when you're out and about. I usually carry enough for a couple of days in my bag when I leave the house, just to be on the safe side.

22. Pack More Medicine Than You Need
If you're travelling, it's wise to pack more medicine than you need and to duplicate it, with one batch in your suitcase and another in your hand luggage or partner's luggage, so if a bag goes missing, you're still covered for your entire trip.

23. Don't Skip A Dose For A Drink
I don't recommend intentionally skipping a dose or two of your painkillers so you can have a drink. It just isn't worth it. I stupidly tried this a couple of Christmases ago. I skipped three or four doses of my painkillers, and spent Christmas night and Boxing Day writhing in agony in bed, dealing with some nasty withdrawal symptoms, unable to sleep, or enjoy the festivities. The extra pain and illness was not worth that glass of Archers. Not one bit, sir.

24. Check With Your Doctor First
If you're on medication and want to have a few drinks over Christmas, check with your doctor first to find out if it's safe for you to do so. It really isn't worth the risk of finding out if it's safe through trial and error.

25. Book Any Urgent Medical Appointments Now
Many doctor's surgeries and community hospitals close over Christmas and New Year, so you might wish to find out the Christmas opening hours of any you frequent, and book any urgent appointments now.

26. Stock Up On Heat Patches
Stock up on cold / heat packs and patches to soothe your pain and relax your muscles at the end of a busy day spent enjoying the festivities. It's also a good idea to keep a few in your bag for using on the go. I personally swear by the Cura-Heat heat packs for severe back pain (these ones). They're twice as large as most heat packs, and can be placed directly on the skin, instead of on your clothes like most are designed for. While they don't help to lessen my (severe) chronic pain exactly, they're a good distraction from it, and they do work on regular aches and pains. I find the heat helps to relax my muscles so I find my torso is less stiff and tense the day after a physically demanding day, which reduces the amount of discomfort I'm left to deal with, helping me cope with the heightened pain a lot better. (This isn't sponsored, by the way; I genuinely swear by these heat patches, and find them helpful on bad pain days).

27. Make Use Of Your Hot Water Bottle Or Hottie
Keep a hot water bottle, microwavable hottie, or wheat bag to hand and use them as often as you need to. They could help to relax any tense muscles, soothe sore spots, and distract you from the pain, as well as making your bed extra cosy to rest in, which is always a bonus.

Travelling

28. Watch Your Step
If you're out and about enjoying the festivities, be wary of ice and snow. Wear shoes with good tread and watch your step. Having a fall is the last thing anybody needs, and it always seems to hurt more when ice or snow is to blame,

29. Ask Somebody To Clear Ice and Snow From Your Property
If you can't do so yourself, ask a friend, neighbour or loved one to clear the ice and snow from your paths and drive way so you can safely get to the car and back without injury when you're out enjoying the festivities . 

30. Book Train Tickets In Advance To Reserve Convenient Seats
Travelling by train? Book your tickets in advance so you can reserve seats close to the door, luggage racks, and / or toilets, to make your journey that little bit easier.

31, Take Plenty Of Breaks On The Road
If you're travelling by car, take plenty of breaks, and get out of the car to stretch every so often. Give your body a break from the bumpy roads, get some fresh air, and go grab yourself a coffee or a snack until you're ready to continue on with your journey. If you've got a long journey ahead of you, consider breaking it up, and stopping at a motel / hotel half way through for a full night's rest before continuing on.

32. Choose The Most Comfortable And Convenient Method Of Travel You Can Afford

Where possible, choose the most comfortable and convenient method of travel you can afford to make travelling as comfortable and stress-free as possible.

♥ First class will generally give you the most room on planes and trains, and the most comfortable seats you'll find on public transport. You can sometimes find first class train tickets with cut price fairs on certain trains at certain times of day, so if you can be flexible with when you travel, check to see if and when the train fair differs in price. I once managed to find first class train seats for £2 more than standard seats, and saved something ridiculous like £130 per ticket! The chairs had much better lumbar support, and lots of extra room so the journey was far more comfortable than in the standard seats.

♥ Trains are generally the least bumpy option on land.

♥ Cars are probably the most convenient option, but driving along bumpy roads can be extremely painful and exhausting.

♥ Flying will take less time if you're travelling a long distance, but it's not always the easiest way to travel, what with the time it can take to get through security, customs, and boarding and disembarking the plane, the distance you may have to walk or wheel to get to the gate, and the amount of time you have to wait around before the flight. Plus, you might get frisked going through security, which could be painful depending on your condition(s), and how rough the person is with you, and you could face difficulties getting medication and medical equipment through security, too. There's a lot to consider.

♥ Buses may be one of the most inexpensive options, but journeys can be lengthier than by other modes of transport, and extremely bumpy to boot. They also tend to have erratic heating- either freezing cold or stiflingly hot, and the seats can be cramped, so it's not always the most pleasant option.

33. Ask About The Sleeping Arrangements
If you're visiting friends or family for a few days over Christmas, find out what the sleeping arrangements will be ahead of time. If you'll be sleeping on the sofa or a camp bed and know it will put your pain levels through the roof, you might want to consider booking in to a hotel to make your stay more comfortable. It will probably be easier to relax and rest in whatever manner makes you the most "comfortable" away from a house full of people, too.

34. Go For A Lie Down
If you're visiting friends or family for a gathering or party and the pain and noise becomes too overwhelming, don't be afraid to ask the host if there's somewhere you can go for a lie down for a while. It's unlikely that they'll refuse your request, and just leave you to suffer and suck it up.

35. Ask Friends and Family To Visit You
If travelling isn't possible this Christmas, ask friends and family to visit you. This doesn't necessarily have to be for a big family gathering, party, or a long stay; how about just inviting your favourite people over for a cuppa  / glass of wine, and a catch up in small numbers?

Keep It Simple

36. Look For Ways To Save Time and Energy
I'm sure you're already a master at this, living with chronic pain and / or chronic illness an' all, but look for ways you can save time and conserve energy so you have more spoons for enjoying the festivities,

♥ Use dry shampoo, 2-in-1 shampoos and conditioners, leave in conditioners, and cleansing wipes to cut a few corners in your routine.

♥ Eat food you can quickly throw together, cook, or bung in the oven so you don't have to spend all day slaving over a hot stove, or perhaps treat yourself to a cheeky takeaway so you don't have to cook at all.

♥ Use paper plates, cups, and plastic cutlery on ordinary days over the festive season so you don't have to wash up as much. It's not great for the environment, but it can make life with chronic pain and chronic illness that little bit easier when you're short on spoons, and have a lot on.

♥ You could also use disposable foil trays for cooking your Christmas turkey and roast veg, so you don't have to spend ages scrubbing away at stubborn grease on metal trays.

♥ Instead of wrapping presents with wrapping paper and fiddly sellotape, pop them in gift bags with some colourful tissue paper. You'll be done wrapping in a fraction of the time. I spent 14 hours wrapping Christmas presents last year, over two days, and it left me in so much pain and in such a state that I could barely move for a fortnight. Looking back, it seems stupid considering presents are ripped open in seconds, and most people will hardly notice how beautifully a present is wrapped in the excitement to find out what lies beneath the paper.

Get Comfortable

37. Make Your Bed Insanely Comfortable
Make your bed as comfortable as possible so you can be as comfortable as possible when you're resting after a long day. Use the comfiest, cosiest, softest bedding you have, a thick duvet, and plenty of pillows and blankets, and curl up like a burrito.

38. Wear Comfortable Clothes and Shoes
Always wear clothes and shoes you feel comfortable in- even if that's pyjamas and slippers, or trackies and trainers. There's no use adding to your discomfort by wearing something that's too tight, scratchy, likely to chafe and blister your skin, hurt your feet, or restrict your movement. You don't necessarily need to sacrifice your style, just make sure you outfits are comfortable to wear. I find I'm most comfortable is a dress over leggings with slip on ballet pumps and a cardi in public, and pyjamas when I'm just slobbing around the house / resting.

39. Make Use Of Cushions and Pillows
Prop cushions or pillows behind you when you're sitting up in a chair, in the car, or in bed, for some extra comfort.

40. Keep Your Essentials To Hand
Keep a bag to hand with your medication and other essentials inside (phone, camera, heat patches, tissues, lippy, etc.) so you don't have to keep getting up every time you need something- even if you're just chilling downstairs at home with your family. I find this really helpful over Christmas when I'm already exhausted from the festivities, and it's taking all I've got just to sit on the sofa without screaming. Having everything to hand saves a lot of painful movement, conserving your energy for enjoying Christmas with your loved ones.

41. Relax In A Hot Bath or Shower
If you can get in and out of the tub, have a hot bath or shower at the end of the day, to loosen up those tense muscles and sore spots. If like me you usually can't, grab the heat patches and / or hot water bottle instead.

Be  Prepared and Be Realistic

42. Be Realistic

Be prepared for the fact you probably won't be able to do everything you want to experience over the festive season, or on the same scale as you may have done in the past, if you were previously healthy / healthier. It can be difficult to come to terms with if you love Christmas and are dying to immerse yourself in all of the fun Christmas activities, parties, and gatherings the festive season has to offer, but there's no point setting yourself up for failure and disappointment, and finding out the hard way. If you struggle just to get out of bed every day of the year, it's unlikely that you'll suddenly be able to power through the festive season, so be prepared that your Christmas might be different than it once was, and the picture you might have built up in your head.

How do you get through Christmas with your chronic pain or chronic illness? Have you got any helpful tips I've not covered that you'd like to share? Let me know in the comments below!

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Another Boring Health Update (April 2015)

It's been about a month since my last health update, so I thought it was about time I stopped by to tell you what's been happening.

If you read last month's post, you might remember that I'd just been diagnosed with an inflammatory condition, but was waiting to see my doctor to find out which one I'd been diagnosed with.

So, the big news?

I couldn't tell ya!

I still don't know.

It's been six weeks since I received the letter which brought word of a diagnosis, and I still don't know the full picture.

I naively thought the process of finding out would be pretty simple; phone up the hospital, make an appointment, see the specialist for a chat, come up with a new plan of action, come home, the end. Sadly not. It's been frustratingly complicated.

For starters, it took me the best part of a week to get hold of my specialist's NHS secretary to make an appointment, only to be told I need to get referred back again by my GP. (My specialist is a private spinal surgeon, but he chose to take me on as an NHS patient in early Autumn.) I've just spent four or five months going to physio with his osteopath colleague- who he referred me to- in the same hospital, but because I've not seen him personally in three months, I have to be re-referred. It's frustrating because my specialist sent me for treatment, got my blood tests results, made the diagnosis, and sent me the letter to tell me. Surely that should count as being under his care?? Apparently not to his secretary.

I wasn't thrilled about having to go back to see my useless GP after all that had happened. I think I even expressed how determined I was to never see him again in my last update. He'd made too many mistakes. I couldn't deal with the stress of going to see him, so I put off phoning up for an appointment for a week or two, to give myself a break. I finally manned up, and went to make an appointment about a month ago... only to learn he'd had a stroke that weekend. Poor guy. As useless as he's been, he is a nice man, and he didn't deserve a stroke. I don't know how bad it was, but I guess even mild ones can be life-altering. It's sad because he's only fifty-something.

I made an appointment to see a different GP who I have seen in the past, but I had to wait a few more weeks because all of the doctors were busy taking on his appointments as well as their own.

I could have gone to see my specialist privately the same week I received the letter, but I thought it was stupid and careless to pay £175 to see him (the fee for a 10 minute consultation), when I could wait a little longer and see him for free. £175 is a lot of money to waste and there are so many better things it could be spent on. It's the reason why my specialist offered his services for free; he said he'd rather we spent the money on treatment instead of wasting it on his consultations.

On Wednesday, my doctor's appointment finally came around, and shock horror, she was even on time! I asked her for the referral, but she said she couldn't refer me back to the specialist because the specialist's last letter didn't say I needed to see him! She could refer me to the rheumatologist he wants me to see next, but she can't refer me to him. I had to explain the situation a few times, but she wasn't having any of it. I wanted to bang my head against a brick wall. Seeing a private doctor on the NHS can be a pain in the arse at times; it's hard for some people to get their head around it. She said she'd phone his secretary to find out if I need to see him and get back to me by the end of the week, but that never happened. I never got a phone call. This is why I leave every NHS appointment wanting to tear my hair out. Nothing ever gets done.

Six weeks have passed since the letter landed on the door mat, and I still don't have any real answers or even an appointment with my doctor.

My parents now just want me to make a private appointment to see him, to get it over and done with. They think too much time has passed already. The last appointment I had at the hospital was in February. I've been trying to refuse, because I don't want to waste their money, but they're refusing my refusal, so I think I don't really have a choice. I'll probably end up going for a private appointment soon. They're off on holiday on Monday, so it's buying me a little time.

I personally don't mind waiting, because I don't think the diagnosis is going to really change anything for me. Even having a full diagnosis, I'm pretty sure I'm still going to have the pain and other symptoms every day, along with all of my other daily challenges. I know it'll be easier mentally and emotionally knowing the whole picture, but I doubt my life will change physically from day to day; at least not to begin with.

Nothing has been confirmed officially, but the GP I saw this week does seem to think I have rheumatoid arthritis. It didn't say so in black and white on screen, but she was confident by what she read. (Which is interesting since my usual GP told me my results were negative!) It's actually been my number one guess since I got the letter telling me I have an inflammatory condition. I can relate to what I've read about it, and it makes a lot of sense- particularly since I've already had some arthritis found in my lower spine. I guess I'll know for sure before too long, and if I have got it, hopefully I'll be able to find out if it's causing any of the pain, and if anything can be done to make me more comfortable. But, one step at a time...

I don't want to self-diagnose or jump the gun before I know for sure; it won't do me any favours.

I'll be sure to keep you all posted as it all unfolds! I'm sure I'll have my answers in the next couple of weeks, and when I do I'll write another update.

I just wanted to end this post by saying a big 'thank you' to everybody who read and left such lovely messages of support on my last personal post. Your messages really meant a lot to me, and I'm still so touched that you took the time to write them. I really do have the best readers and blog friends! 

Thanks for reading, and thanks for continuing to tolerate my boring rambles! I promise tomorrow's post will be far more exciting.

A Little Health and Physio Update

My thoughts have been somersaulting around in my head like a rogue acrobat these last few weeks. I've tried to purge those thoughts on to paper so many times, but every time I've tried, the words just haven't come. I guess I've needed some time to let recent developments and emotions sink in, and for my thoughts to unravel.  

The reason why my head has been all over the place is because so much has been happening with my health and health care lately. As some of you will know, over the last few months I've been working with a new physiotherapist / osteopath to see if anything can be done to reduce my chronic back pain, and improve my quality of life, without going under the knife. Eager to avoid surgery- the thought terrifies me- but get my life back, I've been exhausting different treatments with my osteopath, and giving everything my best shot.

Since my first session with him in late October, we've worked through soft tissue, massage, cranial sacral therapy, acupuncture, and manipulation, and that all follows the round of spinal injections I had with my spinal specialist late last Summer. It's been a completely different approach to the small amount of physiotherapy I received on the NHS, but since their generic stretches and exercises never led to any improvement, my new osteopath decided to try a different route with me.

I willingly agreed to try every treatment he offered and with an open mind, knowing that I have nothing to lose. I don't think I'm in a position to be turning down treatment three and a half years down the line. A treatment will either work or it won't, but I won't know for sure unless I give it a shot. It's all just a game of trial and error, and I owe it to myself to try all options.

Though it's a fact of life that sometimes trying just doesn't make a difference. Despite my best efforts, not one of the treatments I've tried so far has led to even a tiny speck of improvement; in fact, many of them just made things worse!

I came back from every appointment in even more pain than when I got up that morning. The persistent kind of pain that over stays its welcome like an imposing, detestable relative that can only be tolerated in small doses but comes to stay for weeks on end, until it feels like they'll never leave. This intense level of pain would settle in for up to a fortnight after each session, and on several occasions, it stopped me from even getting out of bed unaided. I often didn't have the chance to recover from one appointment before moving on to the next, but, of course, that's to be expected with physiotherapy... even if most of my treatments weren't even vigorous or invasive, and the extra pain didn't eventually result in improvement.

I never let it break my spirit or determination, though. The outcome of these sessions rarely had a negative effect on me mentally or emotionally; somehow I remained laid back and up beat. I see my situation as "it is what it is", and it's so normal to me now that it doesn't often get me down; I tend to remain cheerful and undeterred. I know I'm doing it for my own good. I just made sure I got myself to each appointment, did what was asked of me to the best of my ability, and worked on getting through one day at a time. That's all anybody can do, right?

My osteopath is baffled by how every little thing causes me pain, and how badly my body responds to touch. He says from a musculoskeletal point of view (and his), it just doesn't make sense to him. Apparently having Bertolottis disease (spine fused to my sacroiliac joint), arthritis in my lower spine, torn, herniated, and degenerated discs, sciatica, and a few other problems isn't enough for this man! It's more than enough for me! Ha ha!

He was convinced that there was something else underlying that had yet to be discovered, and after he found the arthritis in my spine in December, we had a chat about my history of joint pain during a session of acupuncture. The short story is from the age of twelve, I regularly suffered horrendous aches and pains in my joints, particularly in my legs, feet, and arms. It was so bad I was often in tears, I often walked with a limp, and had to be signed off p.e. for my last two or three years of secondary school. My legs gave way from time to time, which led to me falling down the stairs at school on three separate occasions. My doctor just dismissed it as growing pains, the physiotherapist he sent me to just called me fat (I wasn't at the time!), and most people just thought I was making it up. It continued throughout my teens, but it did ease a little by the time I was in college... or at least I thought it had. I began studying animal care at the age of sixteen, a few days before 9/11, and for the next decade I worked with animals and in retail, doing back-breaking manual work on a daily basis. I did a hell of a lot of heavy-lifting, and when I came home from work in pain, unable to move most nights, I just thought it was because I was working too hard! I know now that it was mostly down to the undiagnosed conditions; the same ones that are causing my symptoms today! I don't know why I didn't make the connection until I went private and my conditions started to be diagnosed; I guess I'm not the brightest crayon in the box.

After going over that story, my osteopath decided to arrange for me to get blood tests, so he could find out if there was anything unusual with my inflammatories which might diagnose or rule out a few things. I had to go back to my (NHS) doctor's surgery to have them done, and something told me it wasn't going to go smoothly. 

The actual blood tests weren't a problem at all; it was going back to see my GP- twice- for the results that made me want to bash my head against a brick wall. The first time, he didn't have all of my results back, but he wouldn't explain the ones he had. He just mumbled something about rheumatology and arthritis before ushering me out the door. In the end, I had to ask for a copy of  the results and turned to Google to make sense of them! When I went back for the others a week or so later, he just told me they came back negative, which after last time made zero sense. Again, I asked for a copy of the results for my records, and he kicked me out within two minutes. I can't begin to tell you how stressful and frustrating I find appointments with that GP! Not in a distressing way; just that he makes me wants to bang my head against a hard surface. He's a nice man, but he's just so useless.

I went back to see my osteopath after both of those appointments, and he was equally confused by what the GP had told me. The first piece of paper told us that there were abnormalities in my blood. My plasma b proteins, for instance were over 27, but a normal level is less than 5 (!), which showed my inflammatory parameters were very high. (Meaning I have a lot of inflammation in my body). What annoyed me, more than anything, was that the piece of paper also listed my results from 1998 and 2011, and the levels were higher than average both years, but my GP had never informed me or investigated it. Who knows how different things might have been if he had.

The osteopath told me he was going to arrange a meeting with my spinal specialist (who would have a copy of the blood tests sent to him) ASAP. And I decided I would wait to hear my specialist's prognosis / diagnosis, too, because I just didn't trust what my GP had told me.

Before that session was through, my osteopath decided to try some manipulation on my back. I was concertinaed in to a foetal position, with my arms laced through one of his, and was manoeuvred about like a rusty old hinge. My body reacted so badly to the manipulation, that he couldn't "get in" to my joints and had to scrap the idea. My body is extremely and involuntarily tense 24/7, no matter how relaxed I feel, and because of that, manipulation just won't work on me. 

After we reached that realisation, he sat me down for a chat, and had to be blunt with me. He told me that although he had promised me that he wouldn't give up on me, and that he'd do all he could to make me better, he just didn't think he could do anything else for me. We'd already tried it all. And not one little thing had worked. I understood what he was saying, but the words still stung a little. 

He told me he was going to have a chat with the specialist, who would hopefully have some suggestions on what to try next. If not, then the only other option he could try would be to look at targeting my life style- diet, exercise, sleep, enrichment, and most likely, weight-loss; working me hard in the gym in my trainers. (Trainers? Me? Ha ha! Apart from Converse, I've not worn trainers in well over a decade!)

After that appointment, I left on a bit of a downer, and the realisation that I was running out of options scared me just a little. It really began to hit me that I might never get better, even though I've known and accepted that as a possibility for years. I felt like as I'd exhausted everything with the osteopath that I was getting closer to being sent for surgery- and that terrified me! My specialist has talked about surgery on several occasions, but I've always been adamant that it will only be a last resort; I want to know I've exhausted all other options first. I know it's stupid worrying about things that haven't happened yet or are even set in stone, but I just couldn't stop myself from thinking about it. I'm a naturally anxious person.

I got lost in a dark haze for a couple of weeks following that chat (last month). The depression awakened from its long slumber and hung over me like a little black rain cloud, drenching me with disdain every time I allowed myself to think about my health or health care. I hadn't felt that low in a couple of years, and no matter how hard I tried to fight it, I just couldn't seem to shake it.



Thankfully, the fog lifted a couple of weeks ago, and I'm back to my usual self again. To be honest, that episode was a walk in the park compared to how bad I suffered with it (depression) in my late teens and early twenties, and it seems to be lying dormant again now. I'm back to feeling content, laid-back, and cheerful.

Last week, I got a letter through the door. It was from my spinal specialist, explaining that my bloods showed an increase in my inflammatory parameters, which suggests an underlying inflammatory condition, and that this is the cause of many of my on-going symptoms! Finally, another break through!

I don't know why, but I wasn't surprised by that letter! I knew there was something else going on, and I knew my GP was wrong when he told me my results were negative. When I read the letter, I couldn't help but laugh. I would be mad, if it wasn't so hilarious! This letter just confirms how useless my GP is. This is one step too far for me. Too much has been missed and over looked over the years. I could've gotten better care from a goldfish than this doctor (and several others at the practise), and quite frankly, I'd rather chop off my arm with a rusty blade than go back to see him again. The last couple of months have just reminded me why we went private, and how fantastic my spinal specialist and osteopath really are. Going private really has been the best decision we could've made, and I'm so lucky to have found these amazing medical professionals. The difference between care, knowledge, and initiative has been huge.

At this moment in time, I don't actually know which inflammatory condition I have, although my guess is rheumatoid arthritis (since I already have arthritis in my spine). I need to go in and have a chat with the specialist, to find out and understand what it means for me. I was hoping to see him last week, but a bad cold has been holding me hostage. I'll be phoning up today to arrange an appointment, so hopefully I'll have my answers by the end of the week.

What I do know is that my next step forward is going to be with a rheumatologist. I don't know much about that kind of care, and I don't know where that road will take me, but I'm actually looking forward to finding out. Wherever it takes me, you can be sure I'll be giving it everything I've got, and doing what needs to be done with a shed load of determination. There's still a lot of fight left in me, and I'm not giving up just yet! I owe it to myself and my family to keep on fighting, and I plan to keep on fighting 'til the end.


If you've made it through to the end, thanks humouring me while I've emptied my thoughts, and thank you for reading. I promise to bring you a fashion related post tomorrow.

If you're living with the same or similar health conditions, are going through a similar health care journey, have any questions and / or want to get in touch, please feel free to message me. You can leave a comment, email me, or reach me through any of my social network accounts, that are linked to above in the left hand sidebar.