Protecting the (In)sanity

When I feel overwhelmed with things that life throws at me I have a habit of going underground for a day or so. By underground I mean out of the social scene. I hold all calls, don't look at emails/texts, I don't participate in chats on Facebook/Google+ or anywhere else.

Long ago I recognised that by doing this I can avoid reaching low levels of depression, over do the humour to ignore what I'm really feeling or worse still, sharing a negative that I ultimately know is only temporary. This is my way of saying to my friends and family 'I'm ok, I just need to regroup' or in other words, spend a condensed amount of time focussing on prayers, scriptures and thoughts. I will indulge in listening to talks, reading Lds literature and journalling out all my worries and frustrations so I can reassemble some order before I pray about them and get some direction.

You see, my faith is the difference between the choice of being the person I want to be b/c of the trials I need to endure and learn from and the person that just gets by. I've done the latter for two years and I have to say, it's a lonely road where I feel like I'm walking the M5 in rush hour. I love having faith, I love being challenged now I recognise it and have a back up plan to it, I love that my belief has developed from faith to knowledge and I love that there is a reason for all this happening.

So while I may only be seen skulking around Fb (I'm playing a game on there that fills in the times when I can't sleep and feel all thought and cried out) I do need to take the time to prioritise myself and do all I can to be the me I was intended to be.

Therefore.... I urge anyone that's feeling overwhelmed to shut up shop, close down the world and take what time you can as a health day. After all, there's not much worse a feeling than feeling than you are lost in your own life.

Debs

Coming off methatrexate...

11 days ago I went for the routine blood test which is conditional to taking methatrexate, remembering it is a drug for cancer patients doesn't exclude some of the side effects that sometimes do not agree with RA endurers. I thought nothing of it and waited for my repeat prescription to be ordered and delivered within 2/3 days. The following day I had a call from my GP telling me to stop taking the methatrexate until further notice.

I don't tend to see my GP about a lot of things, I tend to either wait till I see my Rheumatologist or suffer in silence so it was a little worrying to get this call. He's a good Dr and I get on well with him, he listens and seems trust what I say. Having had the conversation on how I wish to be given information, ie. do I want the facts, relative information or full information. I opted for relative b/c 1. I don't remember all details when it comes to medical stuff and 2. I don't want to worry about what could be unless it becomes relative to me. So Dr H explained that my blood count should be between 25-40 and mine has always been 35-40 but this time round it was 112. Quite a jump there.

I asked what this meant and he said that such high red blood cells are potentially a bone marrow risk. At this point I didn't want/need more information b/c it was a shock to hear and it also wasn't relative unless a second blood test gave similar concern. I was asked to get another blood test the following week.

Something went a bit wrong somewhere there, the nurse didn't prioritise the appt that the Dr had classed as urgent and I now get the test tomorrow. I know the Dr is going to chase up the results at the local hospital the following morning so till Wednesday I won't know if I can go back on methatrexate or not. I don't know if there is an alternative medication if I can't.

Because I've only been on methatrexate 2 months and I had a sulphasalazine jab at the same time I don't truly know how much of my improved mobility was relative to what drug but last week I noticed a difference and as the days have gone on I'm seeing more swellings, stiffness, pain and limited movement. It hurts to get up off the sofa, to stand and to get my knees comfortable again. Popping to the shop like I often do is again an ordeal. My local garage, where I've made my regular go to place, are very good as they've watched me go in almost daily, we banter and have a giggle as I'm being served. There's around 4 or so staff that will see me and either walk round the store with me or come to my aid when they think I'm done then will carry the stuff to the car, without asking, they just care and that says a lot about them personally and as staff. It keeps me going back even if I do pay a little over the odds with some things, having that help makes a huge difference to me. 

I have a new and temporary occupational therapist (they're going through job shifts/retirements/recruitments at the moment) who has assessed my need for a stair lift, said that she's recommending one as even with metha I still struggle to get up the 13 stairs. Now it's in the system I wont get notice of a yes or no but I'll find that one day someone will show up and be ready to just fit it, that's what happened with my new wheelchair and when I first had the other aids I've come to rely on. I find it almost humorous really that they assume I have no life whatsoever. I know they're right but they don't!! ;)

The new Midi Merc... yet to be used, three weeks on :/

So here we are, the end of the Easter break and I've done zero with my kids, they complain about nothing and entertain themselves. Not the kind of parenting I ever wanted and definitely not what I'm comfortable with. I have two other kids, two granddaughters and two parents who I wish I could see more too, but it's not going to happen as I am now. I don't mind admitting that I have hit rock bottom again. I feel caged in with this condition, like a recluse at home and pretty much alone in almost every way. I don't know how to fix it or come back from it at this point. 

I won't even get started on the fatigue, that just reduces me to tears at the drop of a hat.

Today I feel like I'm no longer living but just existing, and b/c of that so are my kids and that really makes me feel useless no matter how much it may be temporary or they understand. I wish I could feel that it will be different next week or next month, but then life with arthritis is so unpredictable that you can't even make plans from one day to the next.

Debs

It's magic meds day and all is well with the world

I don't fear Wednesdays anymore.

Once again they roll around like any other day of the week.

It just happens to be the day I take the metha and be reassured that my body is accepting it.

This last week has seen me come through the fatigue and enter insomnia.

I have to laugh, there's always something isn't there?

However, it's been a blessing to have my mind stay around a little longer for a thought to finish developing. Who knows, maybe I'll finish a whole paragraph of thoughts! :)

If you don't get my humour we probably shouldn't be friends :P

So I sit here with my pills, my cucumber water and a huge smile on my face.

Feeling so very thankful that this medication has been created, been proved to benefit arthritis and that my body fits the protocol to take it. I'm also feeling very thankful that I it is giving me some of my mobility back. I am so grateful to my Heavenly Father for the journey He has travelled with me this last year.

I've hit rock bottom, I've cried, I've laughed, I've got angry and I've given up. He had my back.

I've talked, I've listened and I've acted. He still had my back.

For me, I need the people who have my back, I need my Heavenly Father and therefore I don't mind having arthritis.

I'm even showing signs of losing a few pounds, so what more could I ask for at this point?

What has your week been like?

Debs

Check in

Yesterday was week 5 of Methotrexate.

I think I still have the sulfasalazine in my system, I'm not sure.

What is making it easier for me to walk, metha or sulfas?

This last week I had no new or lasting side effects of the metha so I was really excited about that. The latter end of the dry cough reduced by a good 95% now it's almost gone completely.

Fatigue moved in and I think I may be battling that along with a low blood count. The difference between the two is obvious when you live with the former. A phone appt with my GP will hopefully help (scheduled for Monday).

The eyelids feel like they are made of sandpaper, optrex doesn't help, warm water does for a while and I'm hoping the Dr can give me something in between that may ease.

I'm drinking the whales out of a home but I'm not diabetic.

I'm more familiar with 3am than I am 3pm.

My appetite is much less than usual, while I've never really had a huge one anyway this is a little worrying as I can go days without eating and not think about it. I should be a much smaller dress size than I am but I think the meds are having their input.

At least I have food storage on hand ;)

My willingness to interact with people is minimal. My concentration has gone astray and therefore my get up and go has left home.

Taken from Here

However, I will not give up! A good dose of General Conference talks will get me going, wake the pulse, insert some mojo and/or do whatever it is that needs doing.

Until then, I'll be on the sofa....

Debs

Don't mess with the meds!

I was beginning to think that the Methotrexate was a hoax so I went back to the arthritis uk website and managed to find the info I was looking for. I'd lapsed in taking Naproxen and that wasn't cool. For 2/3 days I'd only remembered to take the morning dosage and having to battle with fatigue I often didn't take the afternoon one which has really made a difference. So taking the correct dosages today has proven that either the metha hasn't kicked in yet or its definitely an 'as well as' medication. The nurse confirmed the latter. Dopey!

Another mess up was on my week 3 metha, I should have upped the dosage. Instead I wondered why I had 4 tiny pills left over on week 5 when I shouldn't have had any left. I'd forgotten to up the intake.

Has my mind finally crashed? I'm usually pretty good with this stuff b/c I really want to reclaim some of my life back so if I'm not prepared to help myself it's not really going to happen. My pill box is pretty straightforward, I fill it up each Sunday for the week and that gives me enough time to put in any new prescriptions at least a week ahead, but as I've proven that my brain cannot be relied on (which is nothing new, honestly) perhaps I should promote the pills to a 4 weekly one!

Having spoken to the receptionist at my Dr's surgery she informed me that I am to have monthly blood tests, see the asthma nurse monthly (both strict requirements for the metha) and have monthly blood pressure checks due to me having low b/p and passing out in the past which required the paramedics! Seriously, for someone who doesn't like drama I certainly don't do too bad with it! :)

So my date diary is looking hot.

Oops, wrong diary ;)

So, the message today:

Don't mess with the meds!

Debs

No further side effects, but...

boy am I hit by fatigue again!

Fatigue is engulfing. There is no pushing through it or taking control of it. There is no second wind or magic meds. It has to be treated with kid gloves and we have to submit to it.

When we don't we can run the risk of some potential dangers and embarrassing moments. A few I have encountered are:

Slurring speach -Sounding like I'm intoxicated when I'm tea total.

Loss of balance - Appearing intoxicated be it standing, gripping something or attempting to put something down.

Limited concentration - Starting a sentence but forgetting the end of it, not just momentarily, it becomes lost, watching tv and forgetting the plot while the programme is still showing. Answering a question you've been asked. Attending things you know are important but just don't have the mind to focus.

Driving - If you want to stay alive, forget driving during these episodes as well as using any other machinery.

Hygeine - Brushing your teeth is a huge effort, if you manage it you're either sat where you woke up or you're struggling to get back to where you can sleep. The same is applicable for showering.

Life - During a fatigue episode you need to take a break from life. Literally.

There areis no words available to express the severity of fatigue, it's a feeling that engulfs you no matter what you do to try to prevent, ease or deal with it, the only thing that aids it is sleep. That said, once a 12 hour sleep has been had it's very common that another sleep is needed after just taking a drink. Getting to sleep can be a little like insomnia at times too, it's a rather contradictory condition.

It's a very powerful condition and not one that should be taken lightly. I am blessed that my kids work with me, they have my back and do their best to try to understand. Kirsten does the mom duties where needed and Charley helps with more chores, neither of my kids are high maintenance thankfully. Life stops for the entire household, not just the bearer. It's tough and frustrating to watch it happen to someone, especially when you rely on them to be the adult. I, in no way undervalue my kids or the support and sacrifices they make.

Fatigue brings you to a halt, it brings you down and zaps you of your days. It steals the things you want to do each day, not just need to do. It eats you up and has no mercy at all. But it's temporary, how temporary depends not only on each person but each appearance of it. I've had sessions of fatigue last a few days and at the worst I've had it last 5 weeks.

Photo taken from Here

It's understandable how fatigue can lead to depression and anger. We don't want to be fatigued. We can't do anything such as take a pill or eat more fruit. We can't work through it or press forward. We have zero control over it.

My fatigue has lasted a few days now, day 5 after the week 4 of Methotrexate and no new side effects, the cough is 95% better but a milder case of fatigue is here. I have no idea if it's the symptom of rheumatoid arthritis or the sjogrens syndrome but then again, fatigue is fatigue.

Thankfully though I can get up and potter round the house, sit down, nap then get up and do something else. I'm thankful that it's only mild, I'm thankful that my kids are who they are and that they will do their best to help me but I'm also thankful that they tell me how they feel about it, I need them to know they can be totally open with me about how it makes them feel, to know that I care how they feel and that I will still try to take their load and be their mom. I just may not have any control over it for now.

If you know someone with fatigue, I challenge you to look out for them, just putting on a shoe is all one can do sometimes, go show them they are still valued and loved and you support them and willing to help them it really is an extremely debilitating condition and we often need our closest ones to just assure us they are trying to understand.

Debs

A little bit of me

There's always some part of us that we think is missing. I think it's just the human-ness in us. Sometimes this missing thing can change our outlook on life, sometimes we hike up our socks and just get on with it. I guess it depends what it is.

I started going back to church lately and I'm loving it. I think the relevant people are beginning to understand that my condition has priority over me but I worry that it will affect all the things I want to do within the ward. I have the sweetest visiting teachers, one who is not too dissimilar to me in nature; she's awesome and she inspires me to work through so much more than I probably would. I still do that comparing my weakness to the ideals I'd like thing and I suppose in a way I'm still grieving the life I had and will probably never have with the mobility restrictions. How can I be reliable when I don't know how things are one day to the next? I can only explain so much before anyone stops listening.

I lay awake on the sofa at around 5am this morning planning my day ahead, I have parties to design, individual items to design and create then get photo'd so I can load them on the website, I have a home management book I'm working on and a home that I'm still creating daily and that's not to mention the homeschooling and the lessons. I have a good life, I like how it is, constantly working on things, improving, changing, reshaping, adding and learning. We have a good home, fun, happy, safe and welcoming. But there's one little part of me that is missing.

Love.

This isn't something I would usually be so open about but a few of my friends have challenged me to share my thoughts on being a single parent, self employed, homeschooler and an arthritis endurer so here's my shot at it:

I always knew I wanted to be a mom. I have four kids and two grand-daughters. I've walked through hell for two of them and we've all come through the other side, better, stronger and better equipped for other things in life. Being married and divorced twice is nothing to be proud of but I have no regrets, only that I couldn't make them work. My first ex husband was a good man, we had a pretty good relationship for a long time till things just disintegrated one day and I left. We remained very good friends for years, we parented together still and I encouraged him to date again. I got on extremely well with his girlfriend but that changed with her insecurities so eventually it turned out he turned his back on almost everyone but his partner. I had to pick up the pieces and sometimes I still do, my daughter tries harder than she should do to build a relationship with her dad but he just isn't interested. By the time she reached 17 I told her to look at what she has rather than what she hasn't. I think it's lessened the pain. As a mom this breaks my heart. My second marriage saw him have an affair. Some may say our marriage must have had its problems, some say it's a personal responsibility thing. All I know is I thought we were strong enough to work through his career choices, I made his life too easy apparently. Eventually life without kids won, even his son is in his past, not my choice by a long shot but again I pick up the pieces and do the best job I can. And trust me, I am doing a great job!

Being self employed is natural to me, I've been self employed for longer than I can remember and it's the best way that I can still be the hands on mom I want to be and still work. It's not been an option to be anything other than self employed for over 10 years. It works around my family, it works because I am doing my passion not something I happen to like, there's a big difference. Work is fun and creative, my kids can have an input and I can work while they're here and when they aren't. When I work I feel like I have a little bit of outlet for myself.

Homeschooling is a temporary decision. Made b/c of my mobility issues and the schools strong reluctance to support or help when I struggled to get Charley to school reinforced that the new academy status had shifted over to statistics not education. Waiting for Charley to be assessed for his apparent dyslexia (the school and I use aids that endorse this) has been on the cards for 3 years, if it's not done by the time he starts high school he wont get recognition for it and therefore I worry that he'll struggle. Hes very academic, I want to keep that so while I focus mostly on numeracy, literacy, reading and creativity I feel comfortable that he's getting what he needs. We have super elective home education co-ordinator who helps us out and reassures me that we are doing more than we need to and therefore doing a good job.

Arthritis is here to stay, no matter what I do. I'm taking one day at time with it. I still have constant aches in my fingers, ankles, knees etc but it's more manageable. I still deal with stiffness and fatigue, but I will deal with it day by day. I'm just thankful it's not something terminal.

I run my home relatively organised. I want to be the mom, the one who has everyone's back, creates the rooms that feel safe and happy. I love diy and creating so I try to do what I can where I can. My kids do a lot to help me yet certain things are their responsibility anyway. We work, we laugh, we love, we hug a lot, play and we relax.

Then there's me. One half of something invisible. Shall I tell you a secret here? I have a crush on someone. ;) Only one other person knows about this and he has his life on the life if he reveals it b/c I have no intention of doing anything about it. Why? Well I think people need to be on the same level field as one another to be able to match, and while I think that's not a given I'm not prepared to find out, cos this darn arthritis has definitely put me on the unlevel field whether I like it or not.

While I'm not thrilled over it, I'll settle for admiring from afar...if you can call it that! :) If it's ever intended to change then I know the Lord will intervene. Simples.

Debs