Saturday Submissions – With MeggioMum

Todays Saturday Submissions is brought to you by MeggioMum A.K.A Heather, who lives with Pots and EDS, be sure to check out her wonderful blog about ‘Two cents from a Midwest Mom’, HERE.

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Potsy Mamas: What We’re Hiding

No, I’m not talking about marijuana, though that would definitely be an interesting article. I’m actually talking about coping with chronic illness while raising a family. Perhaps you’ve heard of Disautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), or Ehlers-Danlos Syndrome. Perhaps you haven’t. But these conditions are very real, and being a mom of four (soon to be five) while living with them is a surreal experience full of both suffering and beauty.

Imagine for a moment that, like every mother on the planet, you have more things to do in a day than are physically possible to accomplish. Now imagine trying to tackle that when your body feels heavy like you’re wading through thick mud, and coffee only makes the feeling worse. You’re exhausted like you’ve just run a marathon… ALL THE TIME. Walking up the stairs is like mountain climbing without oxygen. You have to constantly write yourself notes and set alarms on your phone because your memory is swiss cheese. Complex situations are overwhelming because your brain is in a fog, like when you first wake up in the morning, except it never goes away. The mere act of standing makes your heart jump in your throat, and the smallest movements can dislocate a rib or hyperextend a knee. And you are in significant pain every waking moment.

What happens when you live like this every day is both heartbreaking and inspiring. A series of things start to unfold. The first thing to go is your house. Dishes and laundry pile up, as does random clutter everywhere. You forget to clean the cat box and don’t have the energy to mow the lawn. Your house starts to look like an episode of Hoarders and you’re too ashamed to invite people over or even let your kid’s friends inside to play.

Then goes your self esteem. You blame yourself for all the things you know you should be doing. You feel lazy and worthless. Thoughts creep into your mind like “I’m not trying hard enough”  “I’m such a burden” and “My family must be so disappointed in me.” You curse your body for not working right, and feel resentment towards both yourself and towards healthy people who live more mainstream lives. Your marriage suffers, both physically and emotionally, and you start to tell yourself that your spouse would be happier without you.

The guilt and self-blame are the worst when it comes to your children. You want to give them the world, and instead they don’t even bother to ask if you’ll take them to the park because they know that pained look in your eye all too well. You teach your children to be self-sufficient and independent; more out of necessity than anything else. You are proud that your teens can cook dinner, wash their own clothes, and fix their own bikes. You love how your younger kids can quietly entertain themselves outside in the fresh air without you hovering over them. But you also know that their childhood is flying by at lightning speed while you’re laying in bed trying not to throw up.

Then comes the judgement squad. Doctors not familiar with your condition, random people on the street, your kid’s teachers, coworkers, sometimes even your own family members. Everyone has an opinion on how severe your illness is and how you should be handling it. A lot of people don’t even believe your condition is real because you look “normal” on the outside. Your slurred speech and shaky movements means you sometimes get mistaken for an alcoholic or drug addict, and then treated with open disdain and discrimination.

Some people will be sympathetic, but insist you’ll be cured if you would just take more ginseng, or stop eating gluten, or do more yoga. My personal favorite is when they tell you to think positive and visualize yourself healthy.

I am a strong believer in homeopathy, clean eating, healthy exercise, and so on. But none of these things are magic cures that will stabilize the blood flow to my brain and keep my joints from dislocating. None of these things will keep my autonomic nervous system from misfiring like an electrical short. This is what leads to the final stage: the mask.

You start hiding your condition as best you can from the world. You grit your teeth and smile through the dislocations and spasms. When someone asks what’s wrong, you tell them you’re “just a little tired” instead of telling the truth. People get tired of hearing about your symptoms and start to tune you out. You avoid social interaction as much as possible, and start lying to cover up for it. (“Oh I’m sorry I missed the meeting, I had a flat tire”). You completely shut down in stressful situations because everyday life is already stressful enough, and you just can’t bear any more. You decide it is so much easier to put on the normal facade than wasting energy trying to make everyone understand. (Because 80% of them never will.)

I am trapped inside this body like a butterfly in a cocoon, except I don’t get to break free and fly.

There is an odd beauty to it though. This purgatory of inbetween health- not sick enough to be disabled, but not healthy enough to be normal- is like slowing down and living your life in stop motion. You learn to appreciate tiny moments like the sun warming your skin, the crinkle of smile in your daughter’s eyes, the earthy flavor of a hot cup of tea. You appreciate the people who stick by your side, and love them fiercely for it. You learn to let go of the things that don’t matter; like messy hair,  dirty kids, and judgemental people. You learn to slow down and just breathe.

We are moms (and dads) worth knowing.

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Thanks so much to Heather for submitting this post today, does this relate to you? How do you find juggling parenting and family life with chronic illness? If you relate, please leave a comment or consider following the directions below and submitting your own post to share!

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any word count) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

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Social Welfare Cuts Ireland – 2014

Since going into the wheelchair, I have been in the process of applying for and filling out endless social welfare forms and other such applications now that my Husband, nor I, can no longer work given my current disability.

I never realised how much there was that needed to be applied for when something like this happens.

However,  what came as the biggest surprise is how the Irish social welfare system has completely stopped some payments to new applicants without any prior warning, explanation or alternatives given to replace these payments to those who need it the most, for example, the Mobility Allowance, The Motorised Transport Grant, Diet allowance and Mortgage Interest Relief have all completely stopped outright to new applicants, with many changes in other payments.

However, Those who are currently receiving these payments will continue to do so until the scheme is updated.

Those who continue to get these payments are getting a substantially higher payment and far more benefits than what is now available to new applicants. This is very unequal and unfair. I will highlight the rates of pay below that I have come across directly myself and I will outline a brief explanation of the changes in each of the aforementioned payments as of 2014 with some links for more information, as follows:

I am aware that I have highlighted only a few of the changes overall. If there are any payments that I have not highlighted or that I have overlooked please let me know and I can add it to the post, Thank you.

As well as the obvious recommended payments for people with disabilities like Disability and Carers Allowance. Which have been so far left alone this year, the following are the payments that have either stopped outright, stopped to new applicants or have changes:

THE MOBILITY ALLOWANCE & THE MOTORISED TRANSPORT GRANT

This monthly payment has now been completely stopped to new applicants with no updated news on a replacement scheme, which was supposed to be put in place last June 2013. People currently getting the payment will continue to do so but it will eventually be faded out in lieu of a replacement scheme.

What also has stopped to new applicants as of the same date as this, is the Motorised Transport Grant for those people who need adaptations to their car in order to keep their job. This was done so under the radar that a lot of people are completely unaware of the stoppage.

What worries me is, that The social welfare/Government will come along and say that the Free Travel Pass, that those on some social welfare payments are entitled to, will cover this Mobility Allowance, when it simply doesn’t. Bus Eireann Busses (that will bring you from rural areas to accessible areas of the city) are NOT Wheelchair accessible at all. So getting anywhere from a rural or remote area means paying for a Taxi or relying on others to transport you, which completely defeats the purpose and that is why the Mobility allowance and the Motorised Transport Grant is valid and needed.

Now in February 2014, there is still no sign or mention of a replacement scheme for those of us who need it most – info as follows:

The Mobility Allowance: As printed on Citizens information.ie on the 14th February 2014:

The Mobility Allowance is a means tested monthly payment payable by the Health Service Executive (HSE). It is paid to people who are aged 16 and over and under age 66, and who have a disability and are unable to walk or use public transport and who would benefit from a change in surroundings; (for example, by financing the occasional taxi journey). If an allowance is awarded, it will be continued beyond the age of 66 but you may not apply for the allowance if you are aged 66 or over.

There is no specific legislation in Ireland providing for Mobility Allowance. Instead, this Allowance was introduced in 1979 by the Department of Health and is payable under Section 61 of the Health Act, 1970.

On 26 February 2013, the Department of Health announced that the Mobility Allowanced scheme was closed to new applicants. An alternative scheme is being devised to replace it.

On 11th June 2013, the Department of Health announced that Mobility Allowance would continue to be paid to those already receiving it until the scheme is replaced.

Rates:

The allowance is paid monthly. The lower rate is payable to those who are availing of the Disabled Drivers and Disabled Passengers (Tax Concessions) Scheme. The rates for 2012 are:

High rate Low rate
€208.50 per month €104.25 per month

That is a substantial amount of extra money per month that some people are continuing to get, yet new applicants can no longer apply.

DIETARY SUPPLEMENT:

Another weekly payment that has been completely cut without any explanation as of the 1st of Feb 2014 is the Dietary Supplement.

Our local Social Welfare Employee told us that as the 1st of February fell on a Saturday this year 2014 (the day this payment stopped) She and the other workers only got the email memo sent about it when they arrived into work on Monday the 3rd, She said they got no prior warning or explanation.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

The diet supplement was discontinued for new applicants from 1 February 2014.

However, people who were getting Diet Supplement before 1 February 2014 can continue to keep the payment (for as long as they continue to be entitled to the payment).

You are entitled to retain the diet supplement for a prescribed diet, if you:

  • Have a specified medical condition
  • Meet the conditions for Supplementary Welfare Allowance (SWA) and
  • Satisfy a means test

To get a diet supplement, a hospital consultant or a hospital registrar must certify:

  • That you or your adult dependant or child dependant has been prescribed a diet because of a specified medical condition
  • The type of diet prescribed
  • How long you will need the prescribed diet.

A gluten free diet for an adult or a child aged 18 to 22 may be prescribed by your family doctor (GP).

In the case of diet supplements, for example, for people with cystic fibrosis, the long-term illness scheme book may be accepted as verification that such a diet has been prescribed. The length of time for which the diet is being prescribed and the type of diet must be stated.

Qualifying diets

The weekly cost of each prescribed diet is set by the Department of Social Protection. The following diets qualify for the diet supplement: (Some people are continuing to get these payments, but new applicants can not apply)

Qualifying prescribed diets Cost of diet, €
Low-lactose, milk-free diet 65.43
Gluten-free diet 68.43
High-protein, high-calorie diet 71.43
Altered consistencies (liquidised) diet 74.93

HOUSING ADAPTATION GRANTS:

They are very difficult to get as funds are being held tight at the moment. I have also been told from a Social Welfare Employee over the phone that they have not been allocated the funds for 2014 as of yet and that I will more than likely not hear anything about this until next year 2015. I had all documents in since the end of 2013!

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Changes to 3 housing grant schemes were announced in January 2014 and came into effect immediately. The main changes to the Housing Adaptation Grant for People with a Disability are:

  • The maximum income threshold has been reduced to €60,000 (previously €65,000)
  • The percentages of approved costs covered by the grant have been adjusted on a sliding scale (but the maximum grant stays at €30,000, or 95% of approved costs)
  • Extension works will only qualify if no suitable cheaper option is feasible
  • An occupational therapist must confirm that the works are fit for purpose and that they meet the applicant’s needs in the most economic way
  • Income of all household members will now be included in the means test (though Carer’s Allowance should be disregarded)
  • Applicants must prove that they have complied with the Local Property Tax

The Department of the Environment, Community and Local Government say it is preparing revised guidelines for the 3 schemes.

MORTGAGE INTEREST SUPPLEMENT

This weekly payment has now been completely stopped from social welfare. If you are now having difficulty with your Mortgage payments you must speak to your bank in organising help with your payments, yet, once again, People who are currently on it or who applied before Jan 1st 2014 will continue to get payments for as long as they are entitled.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Mortgage Interest Supplement (MIS) provides short-term support to help you pay your mortgage interest repayments.

From 1 January 2014, the Mortgage Interest Supplement scheme is closed to new entrants and no new applications will be accepted from this date. This measure does not affect current claimants immediately (people who were getting Mortgage Interest Supplement before 1 January 2014). The scheme will be wound down for these claimants over a 4-year period.

If you are experiencing short-term mortgage difficulties your lender must support and engage with you under the Mortgage Arrears Resolution Process (MARP). The website, keepingyourhome.ie, provides comprehensive information on the services and entitlements available if you are having difficulties making your mortgage repayments.

RESPITE CARE GRANT

The Respite Care Grant used to be €1700 and is now €1,375 and is paid once each year, usually on the first Thursday in June, for each person you are caring for. It is not taxable.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Information

The Respite Care Grant is an annual payment made to carers by the Department of Social Protection. Carers can use the grant in whatever way they wish. You can use the grant to pay for respite care if you wish, but you do not have to do so. More information about respite care facilities is available.

In June of each year (usually on the first Thursday of the month), the Department of Social Protection pays the grant automatically to carers getting Carer’s Allowance, Carer’s Benefit, Domiciliary Care Allowance or Prescribed Relative’s Allowance from the Department. Only one Respite Care Grant can be paid for each person getting care.

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The long and short of this is, The Irish Social Welfare System needs to get the finger out and sort out their payments so that it is fair and considerate to all people on these benefits.

Some people are out of work, not by choice but because they have been forced to by illness or some other uncontrollable outside source. In these situations support from the state is expected and yet, never organised enough or forthcoming at all.

The only thing about this whole thing that bothers me the most is that the people who already are getting some of the payments will continue to do so until a ‘new scheme’ is written up, and there is no sign of that happening nearly a year after they said it would. New applicants need not apply, we don’t even get the chance to anymore.

This has caused a serious situation of inequality for those who find themselves newly disabled. These people are the most vulnerable in their new state, but receive no proper support.

These haven’t been cuts, they are a cost saving exercise at the expense of the newly disabled which is simply not fair.

I would love feedback on how any of this has affected you directly or affected someone you know. As always you can submit a comment here or write to me at irishpotsies@gmail.com, either anonymously or otherwise, I always love to hear from you 🙂